Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Sylvia on April 23, 2008, 07:24:27 AM

Title: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on April 23, 2008, 07:24:27 AM: Hi everyone,

I'm Sylvia and I work for Resonance Health, provider of FerriScan.

I understand from reading some of the threads that there are some of you out there with FerriScan enquiries. I'm here to help so if you need any information or assistance on FerriScan, please feel free to drop a note.

I also look forward to forming new friendships here in this forum. :)

Rgds
Sylvia Goh
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on April 29, 2008, 01:29:23 AM: Hi Everyone....

Andy has put up a FerriScan Fact Sheet to provide more information on this MRI-based technology non-invasive measurement of liver iron concentration.

The Fact Sheet can be found on: http://www.thalassemiapatientsandfriends.com/index.php?topic=1677.0

Please feel free to contact me if you would like further information. For those in a Thal support group, we are more than happy to send you materials upon requests.

Thank you.

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on April 29, 2008, 09:32:08 AM: Hi,

Can you tell us about the charges? Although i think it's not available in Pakistan.

It's nice of you to be on this forum.

ZAINI.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on April 30, 2008, 03:12:15 AM: Hi Zaini

The cost of FerriScan varies from country to country and it is an additional cost to the standard MRI scanning fee.

Depending on individual country's health system ; some countries provide free MRI scanning faciliities, thus, patients would only pay for the FerriScan component. In some situations, it is also dependent on the reimbursement by the health system/insurer.

For example, here in Perth, WA, a local public hospital decides to fund FerriScan for all their patients. Thus, patients who go to this specific hospital get FerriScan free in their clinical care.

At the moment, our company is planning on reimbursement applications in some identified regions and by obtaining reimbursement, FerriScan service can be made available and affordable to a broader community.

You are right - FerriScan is not yet available in Pakistan. We are actively working on informing and creating more awareness on FerriScan. Do you belong to a local Thal support group in your community? Would you mind sharing your contacts with me?

What I would do is make contact with them and provide further information on FerriScan and explain how the service would assist in the chelation programs. And we will work closely with them should they want to take it forward to provide this service to its members.

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: §ãJ¡Ð ساجد on April 30, 2008, 05:12:27 AM: Hi Sylvia,

:welcome

It's really great to finally see someone directly from Ferriscan.

Though I'm just a patient but I'm also an honorary staff member of Jamila Sultana Thalassemia Welfare Trust Islamabad, Pakisatan.

It would be great if some how you can cooperate with us for the benefit of Thalassemics.

Can you kindly tell us what can you do in this regard and what we can do to avail this facility so that I can have a word with my doctors and project manager.

Hoping to get a favorable response from you soon.

Regards.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on May 01, 2008, 03:13:19 AM: Hi Sajid

Nice to meet you!

We are delighted to be able to work with you to deliver the FerriScan service to the community in Pakistan. I am having a meeting with my manager tomorrow morning and I would discuss the matter further.

I had done some research and I found that there are probably about 100,000 Thalassaemia Major patients. Would you please advise if this figure is updated? Would you be able to fill me in with a bit more information on Thalassaemia in Pakistan? These are some questions I have in mind:

1) How many treatment center are there in Pakistan?
2) Are there any specific regions which have a higher prevalence?
3) How many Thal associations/support group are there? I have tried contacting Prof Raashid from Thalassaemia Federation of Pakistan and Thalassaemia Society of Pakistan before, however I haven't been successful.
4) What is the current monitoring method used to measure liver iron concentration?
5) What is the health system liked in Pakistan? Does the government pay for part of the Thal treatment or insurers' of patients pay for the treatment cost? Does services liked MRI get subsidised by the health system?

Any information you could provide on the above would assist in my meeting with my manager tomorrow. Feel free to contact me direct at work. My email is sylviag@ferriscan.com

Thanks and I look forward to hearing from you soon.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: §ãJ¡Ð ساجد on May 01, 2008, 05:34:33 AM: Hi Sylvia,

Thanks for your prompt reply I really appreciate it.

Unfortunately I believe the figures for Thal. major and carriers in Pakistan are increasing everyday so the rough estimate of 100,000 could rapidly change very soon. Anyway, getting to your queries:

1) There are more than one in the major cities of Pakistan as you can see in the following list of very well known Thal. Centers of Pakistan.

http://www.tfp.org.pk/memsoc/mes.html

Apart from these dedicated Thal. centers, there are major hospitals that provide Transfusion services to Thals. as well. Like this list does not mention the P.I.M.S and Holy Family Hospital in Rawalpindi (where I live and thus know about them) similarly there are others in the different cities as well which the locals know about.

2) The tribal areas of the North, Sindh (better known as inner Sindh) and Baluchistan are more concentrated due to inner-family marriage trend among the tribes.

3) Thal. Society of Pakistan and Thal. Federation of Pakistan are the two main organizations. They are there but I don't know what they are doing?!?

4) The most commonly used method is the Serum Feritin test while some doctors go for the Liver biopsy when needed.

5) There is no medical insurance here while the Govt. is concerned a little about Thal. there are govt. funded transfusion departments in govt. hospitals like the Punjab Blood Transfusion service that operates in Holy Family Hospital. However, the govt. have poor policies on medicine; they take more than 150% tax on Desferal. It should cost a fraction of the price that is available in the market.

6) MRIs are available but I really don't know if there is any other way where the patient does not have to pay (or pay a fraction of the cost involved).

However, I would like to applaud the efforts of Global Pharmaceuticals (The parent of Jamila Sultana Foundation) who provide completely free treatment to all of the patients including covering the cost of tests (hopefully Ferriscan too if you can provide your best offer). They are striving hard to make it as easy as possible for the patients by covering their costs and even making their own Deferiprone and eventually Deferoxamine to totally make Thalassemia a cost free manageable disorder in Pakistan.

Thanking you for considering us to make Thalassemia manageable for everyone.
Regards.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on May 01, 2008, 05:49:37 AM: Hi Sajid

Thanks for the info.....they are very helpful and I will bring them to my meeting tomorrow. I will keep you posted on the outcome. :jumping
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on May 02, 2008, 07:53:38 AM: Thanx Sylvia,

For being so help ful,I belong to the city of Karachi,and we got to AGA KHAN HOSPITAL here for our daughter's transfusion,it's a very well known and well kept hospital,according to the international standards may i say,they don't provide free medical care,but i do know some hospitals who do,like Bismillah Taqi institute of Blood diseases,it's also on karachi and they are providing medical care and medicines either free or on very minimal charges.They also perform Bone Marrow transplant,and as far as i know they were the first one to introduce hydrea here.

THANKS AGAIN.

ZAINI.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on May 02, 2008, 08:15:31 AM: Hi Sajid

I had a discussion with my manager today with regards to offering FerriScan in Pakistan. We are all excited of this new opening and I had to research for further information to put a proposal together.

You have mentioned that Jamila Sultana Thalassaemia Welfare Trust is a project of Global Pharmaceutical. I would like to clarify if Jamila Sultana is a center where Thalassaemic patients get their treatments or is this a trust that provides funds towards patient's treatment?

Would it be appropriate if we contact Global Pharmaceutical directly? If it is, would you please provide me with the contact person's details? I would definitely Cc you in the email to keep you in the loop as you were the initiator.

Also, would you be OK if we contact some of the haematologists whom you know? Would it be OK if you share your contacts with me? We have scientific paper on FerriScan which they might be interested in.

You may email me direct at sylviag@ferriscan.com and please let me know which is the best arrangement to take this futher. Thanks :)
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: §ãJ¡Ð ساجد on May 03, 2008, 03:52:52 PM: Hi Sylvia,

Jamila Sultana Foundation is a Thalassemia Treatment center/welfare trust whose costs are covered by Global Pharmaceuticals. Although the owers are same but the J.S.F is managed by a different team. It would be better to contact the Project Manager of J.S.F for anything relating to Thalassemia because the management of Global Pharma. are different and their only concern is the production of medicine.

Today I had a word with our Project manager that FerriScan are interested to provide their services for Thalassemics in Pakistan. To my shock and amazement he replied "What's FerriScan?" I couldn't believe that they(including my doctor) don't even know about it. I can't believe that they haven't been informed by Thal. Society of Pak. or TIF or their own research on internet.

Anyway they were pretty interested when I told them a bird's eye view of the benefits of FerriScan versus Serum Feritin tests and biopsy. The only concern with them is the costs of the process and MRI.

It would be great if you send in some information literature and your offer to the Project Manager via Post on the following address:

Mr. Usman Asad.
Jamila Sultana Foundation.
D-24, 6th Road.
Satellite Town, Rawalpindi,
Pakistan.

Tel: +92-51-4842184

I will also send you an email for a faster correspondence including a cc to his email address (which he rarely checks :) ).
Title: Treatment centers in UAE
Post by: Sylvia on May 05, 2008, 05:34:00 AM: Hi Everyone

I doing a research at the moment on Thalassaemia Treatment Center in UAE. I found on IronOverload - Middle East website (http://www.ironoverloadme.com/) that there are 6 Thal centers in UAE. At the moment, I can only find Al Wasl Hospital where the main Thalassemia Center resides.

Does anyone out there have information on the other 5 centers? Any information you can provide is very much appreciated. :)

Thank you.

Sylvia
Title: FerriScan in Pakistan
Post by: Sylvia on May 09, 2008, 07:35:26 AM: Hi Sajid

I have just send Mr Usman Asad an email Cc you with regards to our FerriScan proposal. Please feel free to comment and l look forward to hearing back from Mr Asad and yourself.

Thanks.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: §ãJ¡Ð ساجد on May 09, 2008, 07:58:11 AM: Thank You ma'am,

I have received your email and have sent a text message to Mr. Usman's cell phone to check his email as soon as possible!

Thanks for your cooperation and quick response.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on May 09, 2008, 08:04:27 AM: Hi Sajid

Always a pleasure to help. I hope that all of you in Pakistan would get to enjoy what the other Thal patients get in other parts of the world. We all are the same and no one should be neglected due to their location.

I look forward to hearing from Mr Asad. Take care my friend and let me know if you need more info.

Have a good weekend! :)
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on June 24, 2008, 08:43:44 AM: Hello all

Attention all UK and Germany residents
Please be informed that FerriScan is now available at Whittington Hospital in UK and Hannover Medical School in Germany as a routine clinical service.

Whittington Hospital (UK)
Magdala Avenue,
London,
N19 5NF
Tel: +44 020 7272 3070

Hannover Medical School
Medizinische Hochschule Hannover Diagnostic Radiology
Carl - Neuberg - Strasse 1 Hannover
30625 Europe
Tel: +49 511 532 3421

Please speak with your physicians should you want to have a FerriScan done.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: aus on June 25, 2008, 05:34:52 AM: I'm from Perth too. My son is going to have his MRI scan in August for the first time at Princess Margaret Hospital. Will there be a FerriScan component in there?

Hooi
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on June 25, 2008, 05:47:34 AM: Dear Hooi

Welcome!

Yes, FerriScan is available at the Princess Margaret Hospital. Has the doctor provided a referral for your son to have a FerriScan? Please speak to the managing doctor if your son hasn't had a referral. I hope everything works out well for your boy.

Let me know if you need any further details. :smiley
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on June 25, 2008, 06:38:59 AM: I am waiting for the day when there will be an announcement that ferriscan is available in Pakistan.

ZAINI.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on June 25, 2008, 06:46:48 AM: Hi Zaini

I am working with Sajid and his foundation (Jamilah Sultana Foundation) with regards to setting up FerriScan. From my last contact with Sajid, he said that the person in charge is now reviewing the financial aspect of the service. I hope so too that I could put up an announcement for Parkistan soon.

I will keep you inform once there are any new updates.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: §ãJ¡Ð ساجد on June 25, 2008, 08:18:47 AM: I want it to happen it too, but I have to sadly announce that even after convincing the project manager; it's not going to be available for/from J.S.F as the owners(financiers) are not contented with the cost.

:(

Miss Sylvia,

Can you contact other MRI operators or hospitals with MRI facility in Pakistan to introduce it here?
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on June 25, 2008, 01:20:07 PM: miss Sylvia :
try to to convince ur side to establish a setup here in pakistan ..
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on June 25, 2008, 03:41:13 PM: Thanks Sylvia,

For your efforts.

ZAINI.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on June 25, 2008, 11:38:47 PM: Hi miss Sylvia :
i m sending u the adress and contact no's of pakistan some well knowned hospital ....
try to agree them to interduce "FerriScan : Non-invasive measurement of liver iron concentration" in pakistan ... i hope at least one of them could make it possible ...

Lahore Office

Shaukat Khanum Memorial Cancer Hospital and Research Centre

Johar Town
Lahore 54000
Pakistan

Tel: +92 42 5945100
Fax: +92 42 5945208
UAN: 111-155-555
Toll Free Number: 0800-11555
Email: marketing@skm.org.pk

Islamabad Office

Shaukat Khanum Memorial Trust
2 Royal Center
106-West,
Fazl-e-Haq Road
Blue Area
Islamabad
Pakistan

Tel: +92 51 2273400
Fax: +92 51 2274049
Email: skmt@isb.comsats.net.pk

Karachi Office

Shaukat Khanum Memorial Trust
Suite# 10, Mezzanine Floor
Hamilton Courts, G-II
Near Teen Talwar
Main Clifton Road, Clifton
Karachi
Pakistan

Tel: +92 21 5872573
+92 21 5370573
Fax: +92 21 5872574
Email: skmt@khi.comsats.net.pk

-------------------------------------------------------------------------------------------------

AGA KHAN UNIVERSITY HOSPITAL, Karachi
Stadium Road, P.O. Box 3500,
Karachi 74800,
Pakistan.
Tel: 92 21 493 0051
Fax: 92 21 493 4294, 493 2095
Email: akuh@aku.edu, public.affairs@aku.edu

HAEMOTOLOGY/ONCOLOGY SECTION
Department of Medicine,
Link Building,
Aga Khan University Hospital,
Stadium Road, P.O. Box 3500,
Karachi 74800, Pakistan.
Tel: 92 21 493 0051 Ext. 1567, 486 1567
Fax: 92 21 493 4294, 493 2095
Email: oncology@aku.edu

LABORATORY
Aga Khan University,
Stadium Road, P.O. Box 3500,
Karachi 74800, Pakistan.
Tel: 92 21 493 0051 Ext. 1552/3, 486 1552, 486 1553
Fax: 92 21 493 4294, 493 2095
Email: laboratory@aku.edu
--------------------------------------------------------------------------------------------

keep informin to the latest developments ................
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on June 26, 2008, 04:04:32 AM: Hi nice friend

Quote from: nice friend on June 25, 2008, 01:20:07 PM
miss Sylvia :
try to to convince ur side to establish a setup here in pakistan ..

Thanks for sharing the information. I would like to clarify one thing about FerriScan setup. We would like to see every MRI sites to be setup with FerriScan, including Pakistan, however, there are always obstacles (eg: technical, funding issues) that prevent FerriScan from being available. It is not within our control if the MRI center cannot meet our basic setup requirement. We always try our best to work with the centers when initialising FerriScan setup.

Sajid has explained why his foundation is unable to offer the FerriScan service. We now need to approach other Pakistani centers who are treating thalassemic patients. The list of centers that you have provided is very useful. Do you have any contact details to the hematologists from these centers? It would be much easier to contact a person than to send an email to a general address. We get spams so often now that by sending a generic email (without attentioning to a specific doctor), it would be regarded as spam mail and be deleted without reading.

It would be great if anyone of you have contact details to your hematologists and from there I can get in touch with them to provide more details on FerriScan. Any contact details to your thalassemia societies or foundation would be very useful too.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on June 26, 2008, 05:27:09 AM: Hi Sylvia,

Unfortunately i don't have contact details of any heamotologists in Aga khan hospital but i know there names,Dr Khursheed is head of heamotology there,and Dr Salman Naseem Adil is head of oncology,and Dr Zehra Faddoo is in peads heamotology.

I'll try to find some contact info.

ZAINI.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on June 26, 2008, 09:38:25 PM: Dr Mohammad Khurshid (Presidents Award for Pride of Performance)
Consultant Haematologist and Oncologist 486 4415, 493 0051 - Ext. 4415
Full-Time Faculty mohammad.khurshid@aku.edu

Position Dean Medical College, Aga Khan University; Professor

Department Department of Medicine; Department of Pathology and Microbiology;
Section Haematology - Oncology Section;
Main Speciality Haematology and Oncology;
Clinical Specialities Haematology; oncology
Qualifications MBBS (Karachi); D. Path (UK); FRC Path., Haematology (UK); FISH (London).

-----------------------------------------------------------------------------------------------------------

Dr Salman Naseem Adil
Consultant Haematologist and Oncologist 486 1840, 493 0051 - Ext. 1840, 1841, 1525
Full-Time Faculty salman.adil@aku.edu

Position Associate Professor and Head of Haematology and Oncology Section

Department Department of Medicine; Department of Pathology and Microbiology;
Section Haematology - Oncology Section;
Main Speciality Haematology and Oncology;
Clinical Specialities Haematology
Qualifications MBBS (Karachi); FCPS (Pakistan)
---------------------------------------------------------------------------------------------

Dr Zehra Fadoo
Consultant Paediatrician 486 1840, 493 0051 - Ext. 1840
Full-Time Faculty zehra.fadoo@aku.edu

Position Assistant Professor

Department Department of Paediatrics and Child Health;
Main Speciality Paediatric Haematology;
Clinical Specialities Paediatric haematology; oncology
Qualifications MBBS (AKU); Diplomate, American Board of Paediatrics (USA); FAAP (USA); Fellowship in Paediatric Haematology and Oncology (USA).

------------------------------------------------------------------------------------------

i will try to send u more ...
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on June 27, 2008, 03:06:24 AM: Great job Umair .:)

ZAINI.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on June 27, 2008, 04:29:42 AM: Hello umair!

Thanks for the contact details. I will get working on them.....Hopefully, we will see a reply from them soon.

Once again, great job and many thanks!

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on June 27, 2008, 07:18:07 AM: Quote from: nice friend on June 25, 2008, 11:38:47 PM
Hi miss Sylvia :
i m sending u the adress and contact no's of pakistan some well knowned hospital ....
try to agree them to bring ur firm's innovative in pakistan ... i hope at least one of them could make it possible ...

Lahore Office

Shaukat Khanum Memorial Cancer Hospital and Research Centre

Hi umair,

I had a look at the Shaukat Khanum hospital website and I found a haematologist whom might be relevant for me to contact. Do you have the contact (email) details to Dr M. Kamran Siddique? http://www.shaukatkhanum.org.pk/html/ms_kamransiddique.html (http://www.shaukatkhanum.org.pk/html/ms_kamransiddique.html)

It would be great if you could find out for me. For your info, I have already sent an email to the 3 haematologists provided in your earlier posting. I will update you if I were to hear back from them.

Thanks.

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on June 27, 2008, 09:22:14 PM: Thanks zaini :biggrin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on June 27, 2008, 10:03:16 PM: miss sylvia :
sorry to say that i didn't find contact e-mail of Dr.m.karman.sidique .... but i m still trying ....
i got these contact numbers of deparments of shaukat khanum hospital :.

Hospital Administration
Tel: 92 42 5945100 Ext. 2372
Fax: 92 42 5945205

Medical Oncology
Tel: 92 42 5945100 Ext. 2331, 2444
Fax: 92 42 5945206

Shaukat Khanum Memorial Cancer Hospital and Research Centre

Johar Town
Lahore 54000
Pakistan

Tel: +92 42 5945100
Fax: +92 42 5945208
UAN: 111-155-555
Toll Free Number: 0800-11555 its a tool free no of SKM
Email: marketing@skm.org.pk
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Canadian_Family on June 27, 2008, 10:20:24 PM: I sincerely hope Ferriscan is available in Pakistan.

Shaukat Khanum Memorial Cancer Hospital / Research centre and Aga Khan Hospital are one of the biggest names in Pakistan. Funding is not much of a problem for them either.

Sylvia, I encourage you to contact them.

Thanks.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on July 01, 2008, 06:25:49 AM: Hi Canadian Family and everyone,

Thanks for the info. Yes, I have sent out emails to those 3 haematologists Umair gave me. Well, at least I know 1 out of 3 read my email. (I track my emails so I know if it has been read or not).

I can't "chase" them too aggressively as this might put them off and refuse contact with me or worst, if they delete my email without reading. I will follow up with them in a few days and then weeks....the process can be slow (and painful for some!)

I sincerely ask for all of your patience and if any of you have new contacts, please forward them to me so that I can work on them. I would greatly appreciate an email address to be attached with the contact as email contact is the first step taken in our introduction.

Many thanks for all your supports and I will keep all of you posted on the outcomes.

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: §ãJ¡Ð ساجد on July 01, 2008, 08:49:44 AM: Thanks,

We really appreciate all your efforts to make Thalassemia more easily manageable and less painful for all Thalassemics.
:stars
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on July 01, 2008, 01:30:50 PM: Hi sylvia :
its nice to hear that u r making efforts to introduce Ferriscan here in Pakistan...
and facilitate thals of my country .....
secondly info@thalassaemia.org.pk here is the e-mail adress of the Thalasssaemia Society of Pakistan.
Dr.joveria manan is the president of above mentioned society .... u can also contact to her on the phone .... here is complete contact details ........

Head Office:
Thalassaemia Society of Pakistan
146/1 Shadman Colony, Jail Road, Lahore.
Tel: 092-42-7573911 / 7596589
Fax: 092-42-7573911

email: info@thalassaemia.org.pk
Title: FerriScan in Ontario, Canada
Post by: Sylvia on July 29, 2008, 08:13:25 AM: Hello to all

Attention All Ontario Residents

I'm pleased to inform that FerriScan has been approved and funded by OHIP. Dr Melanie Kirby-Allen & Dr Suzan Williams from the Sick Kids Hospital have submitted funding application on behalf of their patients. We have received the approval from Ontario Ministry of Health and the approved patients would have their FerriScan analyses paid for by OHIP.

Please note that this funding submission must be put forward by the physicians.

For more details, please refer to the Ontario Ministry of Health weblink below:
http://www.health.gov.on.ca/english/public/program/ohip/outofcountry/prior_approval.html (http://www.health.gov.on.ca/english/public/program/ohip/outofcountry/prior_approval.html)
http://www.health.gov.on.ca/english/providers/program/ohip/outofcountry/phys_outofcountry.html (http://www.health.gov.on.ca/english/providers/program/ohip/outofcountry/phys_outofcountry.html)

You may also want to highlight this to your treating physician so that they are aware of the funding availability. Please note that all funding is subject to the Ministry approval. Submission of a prior approval application does not guarantee approval of the requested service(s). Individual patient must be approved before the FerriScan service is rendered.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on August 15, 2008, 05:35:03 AM: Attention all Adult Patients in Toronto

After many months of liaising, I am pleased to inform that FerriScan is now setup at Toronto General Hospital.

Toronto General Hospital
Thalassemia / Sickle Cell Program
200 Elizabeth Street
Norman Urquhart Wing
2nd Floor, Room 208
Toronto, ON M5G 1E2

Tel: (416) 340 4882

Please speak with your treating physician or contact the Hospital's Thalassaemia/Sickle Cell Program for more information.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on August 15, 2008, 02:35:31 PM: Hi Miss Sylivia :
did you find sucess to make the contact to any official of Aga khan ( pakistan ) or to any official of thalassemia society of pakistan ????.....
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on August 18, 2008, 02:38:20 AM: Hello nice friend,

No, I didn't have any results from my emails to Aga Khan. I will keep trying. Our company would be attending the TIF Conference in Singapore in October. Hopefully, we get to meet some of the Pakistani physicians at the conference.

I don't seem to get any good results from emailing physicians in the Middle East regions. Physicians don't reply to email. 1) They don't have regular assess to emails or 2) They are not comfortable exchanging information over email or 3) They don't reply emails to those whom they do not know.

I hope that our presence at the conference would help physicians to understand what we do and how we could work with them.

I am not giving up on this regions yet. They are still on my working list and hopefully, we get to see some results after the conference.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on August 18, 2008, 03:09:31 AM: Quote
I am not giving up on this regions yet. They are still on my working list and hopefully, we get to see some results after the conference

hahaha.... its nice to hear that .... keep trying .... best of luck :thumbup .... yeah conference is the best idea to meet and convince people about it ...but.... you have to cut down the price ... otherwise there is 80% chance of loosing this region ... lets see wat happen ..
Best Regards
Take Care
Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on September 11, 2008, 08:21:44 AM: ATTN All New Zealand Residents

Please be informed that FerriScan is fully reimbursed in New Zealand by the District Health Boards and most private insurers.

Kindly speak to your treating clinicians with regards to having a FerriScan. Please also share this information with your Thalassaemia clinics and local networks.

Feel free to contact me should you need any further information and clarification.

Thank you.

Kind regards
Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on September 12, 2008, 02:05:55 AM: Sylvia,

Are there any plans to bring Ferriscan to Delhi, India?
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on September 12, 2008, 02:27:16 AM: Hi Andy

Yes, we definitely have plans to setup FerriScan in Delhi. I had a previous discussion with Vikas (a member on the other thal forum) and we had even put forward a proposal to the thal society. He had advised that the society's secretary would get in touch with us, however, no reply so far. Good news is that Vikas is attending the conference in Singapore and hopefully we get a chance to catch up with him and any of the society's committee.

I will keep you posted on the outcomes. If you have a contact in Delhi, you may pass it on to me to contact.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 12, 2008, 05:24:58 PM: Is T2* and FerriScan the same?
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on October 12, 2008, 07:16:15 PM: Hi Sahil ,

Edited :
Quote
Does FerriScan measure iron in the liver or in the heart?
FerriScan measures iron concentration in the liver only.

How is FerriScan different from T2*?
Both methods use an MRI machine to gain images of the organ but the technique then applied to those images differ between
FerriScan’s R2 method and the T2* method.
How is FerriScan different from SQUID?
SQUID is a small device which is capable of measuring very small changes in magnetic flux. SQUID machines are extremely expensive
and the equipment is very limited (only 4 exist in the entire world). SQUID machines also require a dedicated technician to operate
them. FerriScan on the other hand is a regulated technique to measure iron concentration non-invasively. FerriScan can be used on
any validated MRI machine in the world and by any radiographer.

Note : i have edited complete post ...

Best Regards
Take Care
Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 12, 2008, 07:34:26 PM: Hi Sahil,

Good to hear from you, it has been a while.

Please see the following site for FAQs on Ferriscan

http://www.resonancehealth.com/resonance/FAQ

My understanding is that Ferriscan is used to measure LIC (liver iron concentration using MRI technology).
The T2* uses MRI technology to measure iron levels in the heart, (myocardial iron deposition) while also measuring heart function in terms of ejection fraction and other measurements.

I think that the Ferriscan and the SQUID test can replace on another (I am not sure!), but the T2* in its focus on the heart cannot be substituted by the SQUID or Ferriscan.

I hope this answers your question.

Sharmin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on October 12, 2008, 07:52:13 PM: The test for LIC ( live iron concentration ) is Called R2* and the test measure's the Heart iron is called T2* .. if i m not wrong ...

Quote
With T2*, a bigger score means there is LESS iron in your
heart. With R2, a bigger score means there is MORE iron in
your liver.

Edited : And Ferriscan is to perform R2* test ( LIC ) ... And SQUID is to perform T2* test ( test for Heart Iron )....

Take care
Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 12, 2008, 08:02:46 PM: I find this website to be quite informative:

http://content.resonancehealth.com/000384.pdf
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on October 12, 2008, 08:36:57 PM: Hi Sahil ,
in India there is only one Hospital have the facility of Ferriscan ... Sharmin is right Ferriscan is only for LIC ( Liver Iron Concentration ) Test .... its not for T2* .. here is the adress oof the center where there is this facility available ...

Quote
1 centre(s) found in Asia, India.

Dr Jankharia's Imaging Centre
Bhaveshwar Vihar 383, S.V.P. Road
Mumbai
Maharashtra 400 004 Asia
Phone: +91 22 66173333 Fax: +91 22 23829595

Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 13, 2008, 02:51:40 AM: Thank you very much Sharmin and Umair for the quick replies.

I got my T2* of heart and liver done this August or September (don't remember), so should Ferriscan also be on the cards for me?

Umair, I got my T2* from Jhankharia's Imaging only. But did't know that they do FerriScan as well.

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 13, 2008, 03:40:35 AM: Sahil,

Yes, you should probably do the ferriscan as well because iron is always stored in the liver before it reaches the heart. You should have your LIC levels measured with the ferriscan.

It is great to know that this technology is available to you in India.

Sharmin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 13, 2008, 06:50:25 AM: Hi Sahil,

Nice to see you again. T2* is a scan that measures iron in the heart. Ferriscan uses MRI imaging in a software program that created a 3-D image of the liver and shows exactly where and how big iron deposits are in the liver. Since in most majors, iron will accumulate in the liver before the heart, Ferriscan is a very useful tool for identifying trouble even before the heart is affected. It is also harmless to the patient, whereas liver biopsy does have a small risk of complications (small is a word that has no meaning to me here, because a friend of mine died after a liver biopsy released an embolism into his bloodstream and it killed him the next day). Ferriscan is available in Mumbai and we have been trying to get it into Delhi but the process has stalled and doctors haven't returned emails. I believe Vikas Kapoor was involved in this, so if you are in contact with him (I saw him only briefly in Singapore)please ask him if any progress has been made.

Both Ferriscan and T2* are valuable diagnostic tools and if possible, both should be utilized. Because of the strange chelation patterns that patients sometimes have, iron can build in the heart and not the liver (I'll talk more about this later), so you can't be certain about the other unless both are tested.

Ferriscan, Mumbai
India Dr Jankharia's Imaging Centre Bhaveshwar Vihar 383, S.V.P. Road Mumbai +91 22 66173333
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 13, 2008, 06:57:47 AM: Sharmin,

One quick note. I had mentioned that ejection fraction is not a very accurate test and this was also verified at Singapore.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 13, 2008, 07:07:01 AM: Sahil,

If you already had a liver scan, I don't think you would need to do Ferriscan so soon. It may be something to check out in the future. By the way, how were your scan results?

I also had the pleasure of meeting Sylvia Goh at the conference and also was able to talk to Tim St. Pierre, the founder of Ferriscan, for over an hour.

The problem with the Squid test is that there are only a few of these machines in the world, so T2* and Ferriscan are much more available to patients.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 13, 2008, 11:11:13 AM: Andy,

My T2*reports were as follows:

Heart 31.38

Liver 9.55

Conclusion:

1- Absence of liver and myocardial iron loading.

2- Normal biventricular function. The ejection fraction is 63.2%

My latest Serum Ferritin is 317 ng/ml. I'm not on any chelation at the moment. Waiting for the S.Ferritin to reach 1000 ng/ml. Then I'll start with Asunra (Exjade) again.

I'm not in touch with Vikas. But will surely mail him or leave a message for him regarding the FerriScan.

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on October 13, 2008, 12:54:13 PM: Whoa Sahil,

Quote from: sahil3101 on October 13, 2008, 11:11:13 AM

My latest Serum Ferritin is 317 ng/ml. I'm not on any chelation at the moment. Waiting for the S.Ferritin to reach 1000 ng/ml. Then I'll start with Asunra (Exjade) again.

You deserve a big hand :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :thumbs :thumbs :thumbs :thumbs :thumbs

Congrats,

Zaini.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 13, 2008, 01:02:30 PM: Thank You Zaini!! :smiley

All the credit goes to my parents for arranging everything for me. And my lovely doc, who's a gem of a person. He would always say to get my S.Ferritin below 500 ng/ml.

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 13, 2008, 02:49:08 PM: Quote from: Andy on October 13, 2008, 06:57:47 AM

One quick note. I had mentioned that ejection fraction is not a very accurate test and this was also verified at Singapore.

My T2* report had the ejection fraction thing, so is it inaccurate?

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 13, 2008, 03:32:14 PM: Andy,
Thank you for that information.

Sahil,
The ejection fraction is one measurement they take during an echo cardiogram or during the T2* - the results of ejection fraction measurement are 'interpreted' by the radiologist. It seems that there is a little discrepancy in the interpretation depending on who is measuring it. Your T2* test should be accurate regardless of the accuracy of the ejection fraction value (which is probably in the ball park of 63.2%).

Your test results look great! Doctors here have mentioned that 500 - 600 is the level of ferritin, at which Exjade should be re-introduced/started rather than waiting for your iron levels to go to 1000. At that point maybe you can start on a very low dose of Exjade. You can check with your doctor.

Congratulations on your values! They look great!

Sharmin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 13, 2008, 03:41:50 PM: Yes Sahil, the ejection fraction is an interpretation, so if the result is low it is advisable to have the echo done again to verify the result. Your T2* result is great!
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 13, 2008, 06:14:25 PM: Andy,

Do you know why Ferriscan is not typically done for smaller children? Do you know how big a child should be before they can have Ferriscan? My son is almost 27kg, we have considered taking him to NY for a Ferriscan but we are not sure when it would be a good time to do so.

Thanks,
Sharmin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 13, 2008, 06:18:31 PM: It's actually very simple why Ferriscan isn't used on young children. It requires them to lie still enclosed in an MRI machine for around 20 minutes, so it is not recommended. Also, it is unlikely to have high iron deposits before that age, especially if chelation has been used.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 13, 2008, 06:22:23 PM: Thanks Andy, that makes sense.

Sharmin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 14, 2008, 12:14:55 AM: Andy,

Since we are being followed carefully with the SQUID and T2* right now we probably don't even need to consider Ferriscan at this time. Do you think there is any value for us doing Ferriscan now? My son has an incredible ability to stay still through anything, other than dinner...

He did not flinch during the 45 minute T2* or the SQUID.

Thanks again,

Sharmin
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 14, 2008, 12:21:33 AM: Sharmin,

Wasn't his liver already checked by MRI?

Honestly. the main reason now for doing a Ferriscan would be to establish a current baseline, which can be used to compare to future measures. His intensive chelation should be cleaning his liver out well, so now the heart tests are necessary to see if any change in chelation strategy should or can be considered. Regular T2* tests can also assess the affect of Exjade.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on October 14, 2008, 12:40:36 AM: Hi Andy,

His LIC was measured using the SQUID and T2* was used to look at his heart. They did not find any elevated iron levels in his heart - which was a great relief. As per the study, they are going to repeat all of these tests this winter (probably February) to evaluate how well the chelation is working. I spoke with the Ferriscan people last spring, and I am wondering if it may be a good idea to get a baseline measure.

His Exjade levels were increased this week and this is the fifth week since his last transfusion. His iron levels may drop quite quickly now. He is on 625mg of exjade and 12hrs/day 5 days a week desferal. He gets about 534cc of blood every 4 to 5 weeks.
One concern I have is that between now and February, his iron levels could drop quite drastically (which is great) but I wonder if his chelation should be reduced sooner than February.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 14, 2008, 03:15:24 AM: First of all sorry for asking such a foolish question :smiley

How are the FerriScan reports like? Are they in ng/ml like the Serum Ferritin report?

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on October 14, 2008, 05:32:01 AM: Hello everyone

I'm back from Singapore and the conference was great. It was a great pleasure to meet with many of you! :smiley

From the conference, we learnt that it is very important to manage your liver iron, especially for younger children where iron will start building in the liver before the heart. Dr Farrukh Shah from the UK gave a wonderful talk on FerriScan and how she uses FerriScan in her routine care for thalassemic patients.

Andy has done a great job here explaining how FerriScan works to all of you. To answer some of your questions and to provide more information on how FerriScan is used in the clinical setting:

1) FerriScan uses the R2 imaging technique not R2*. All these different R2, T2*, R2* are methods of MRI image (data) acquisition.
2) FerriScan provides a LIC in mg/g dry weight. For example: A thalassemic patient with a FerriScan LIC in the range of 3.2 - 7.0 mg/g dry weight is considered good. If the FerriScan LIC is more than 15.0 mg/g dry weight. it will be considered high risk for cardiac disease. Click on this link to view the sensitivity and specificity chart. http://content.resonancehealth.com/000345.pdf (http://content.resonancehealth.com/000345.pdf)
3) FerriScan report is usually returned to the MRI center after the analysis is done. The MRI center then forward the results to the referring clinician who will then discuss the LIC results with the patients.

Sharmin, which part of Canada are you from? The doctors in Toronto have been submitting patients application for MOH funded FerriScan. So far, doctors from The Sick Children Hospital and Toronto General Hospital have successfully helped patients to obtain funded FerriScan.

Attached is also a sample of the FerriScan LIC report. You can see from the report that it has a diagram showing how iron is distributed in the liver as well as providing a LIC reading.

Let me know if you need any more clarification.

Cheers,

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on October 14, 2008, 05:39:11 AM: Hi Sylvia,

It was very nice meeting you at the conference and I really enjoyed my talk with Tim.

When posting, right below the box it says additional options. Click this and more options appear. Browse for your file and add it to your post. It will then appear as an attachment to your post.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on October 14, 2008, 05:47:38 AM: Thanks Andy. I modified my reply and insert the sample report attachment. :smileblue
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 14, 2008, 05:49:03 AM: Quote from: sharmin on October 13, 2008, 03:32:14 PM
Doctors here have mentioned that 500 - 600 is the level of ferritin, at which Exjade should be re-introduced/started rather than waiting for your iron levels to go to 1000. At that point maybe you can start on a very low dose of Exjade. You can check with your doctor.

I started off with Exjade when my S.Ferritin was 337 ng/ml. After a month it was 279 ng/ml. Then I got the T2* done. I mailed all of my reports to one of the best hematologist in Mumbai, Dr.M B Agarwal. He asked me to repeat my S.Ferritin every month and the day it reaches 1000 ng/ml start with Asunra (Exjade) again with 20mg/kg.

I spoke to two more doctors in Delhi, Dr. V K Khanna and Dr. V P Chaudhary, both of them said the same thing, to start Asunra when the S.Ferritin is 1000 ng/ml. Infact Dr. Khanna told me Exjade is not to be taken if the S.Ferritin level is below 500 ng/ml.

Its been 40 days I'm off chelation. I would be repeating my S.Ferritin, lets see what the results are.

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 14, 2008, 05:51:48 AM: sgoh,

Thanks a lot for the example report!!

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on October 14, 2008, 11:03:44 AM: Quote from: sahil on October 14, 2008, 05:49:03 AM

Its been 40 days I'm off chelation. I would be repeating my S.Ferritin, lets see what the results are.

How blissful it must be to be off chelation,i wonder when i'd be able to do the same with my daughter.

Zaini.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: sahil on October 14, 2008, 12:03:09 PM: Quote from: ZAINI on October 14, 2008, 11:03:44 AM
How blissful it must be to be off chelation,i wonder when i'd be able to do the same with my daughter.

Zaini.

Don't worry Zaini, your daughters S.Ferritin will get normal soon. You just have to be regular with the chelation. No other way that you can get it down.

Wishing you Luck!! Take Care!!

\peace/
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on October 16, 2008, 06:36:15 AM: I have this doctor from Ahmedabad, India who enquired about FerriScan at the Singapore conference and the email he has provided doesn't seem to work.

Does anyone know Dr Ramesh B. Shah from Ahmedabad who consults at Ashish Children Hospital? If anyone knows his email contact or fax contact number, please contact me at sylviag@ferriscan.com.

Thank you for your help! :wink

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on October 25, 2008, 08:20:56 AM: Hi Slyvia ,
wat are the recent upadtes about Launching Ferriscan facility here in Pakistan ... did you find succes to contact any haemotologist of Aga Khan University , Karachi .... please keep informing us about recent developmets about it ..
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on October 29, 2008, 02:59:00 AM: Hello nice friend

I am still working on contacting hematologists from Aga Khan Hospital. They don't reply to emails. However, some good news is that I met some Pakistani hematologists at the last TIF conference and there is a female doctor who seems to have some knowledge on FerriScan. I have contacted her and hopefully I hear back from her soon.

Another way to generate interest in the doctors is through the patients informing them. Maybe when you next visit your treating doctor, tell them about FerriScan and how it can used in your chelation therapy. Please feel free to pass on my contact details to them if they want to 'verify' the information.

Hopefully, the doctors will be informed when the patients keep generating the interest.

Kind regards
Sylvia
sylviag@ferriscan.com
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on October 29, 2008, 09:23:31 AM: Hi Sylvia ,
Thanx for the reply .. i have discussed about it to my doctor in my last visit , she was lookin keen but the Same expanse Issue ... it make's a little difficult to have this facility here with high prices .. NGO's here in Paskitan run on donations and the funds , its difficult for them to adopt this facility in such a high price ... as you gave intiative to me to give your contact details to my doctor ,it will be good that you talk directly to the Haemotologists ( and my dr as well ) of pakistan .. you may contact them on phone as well ... i will give her your e-mail adress ... soo you and my doc communicate and discusss about Ferriscan .... thank you for giving time and to reply ...

Best Regards
Take Care
Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on November 21, 2008, 05:21:15 AM: New FerriScan Centre in Germany

A new FerriScan centre has been setup in Germany. The centre details are as followed:

Klinikum Nuernberg
Radiologic Department
Prof. E. Nathan Platz 1
Nuernberg D-90340
Phone: +49 911 398 3622

Please contact the centre for local information.

Thank you.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on December 17, 2008, 07:48:11 AM: Hello to all

All of us from Resonance Health would like to take this opportunity to thank you for your kind support for 2008 and wish everyone a happy holiday seasons. For those who celebrate Christmas, may you have a wonderful and blessed Christmas.

Stay safe during this festive season and we look forward to working with more thal communities in 2009.

:ty

Best wishes
Sylvia Goh
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on December 18, 2008, 10:06:38 AM: Happy Holidays to you too Sylvia :hugfriend

Zaini.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on December 19, 2008, 11:59:49 PM: Hope that you are enjoying ur holidays, Happy Holidays To You too Sylvia ...
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Manal on December 20, 2008, 03:49:09 AM: Same to you Sylvia, hope you enjoy the holidays too :hugfriend

manal
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: diskjockey on December 29, 2008, 09:06:40 AM: guys i know some one in government in pakistan.he is the head of the health department maybe he can help us.i would try my best to make feriscan available in pakistan.lets see what i can do for all of my friendz
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on December 29, 2008, 11:01:18 AM: Hi DJ ,
keep the god work up ... we all r hoping to see this facility in pakistan n trying for that ... please try ur best if u think that u can make a change , its hope for a new and better future so please keep trying for this. .. kepp trying for it :thumbsup

Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on December 29, 2008, 03:52:39 PM: That would be great DJ.

Zaini.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: diskjockey on December 31, 2008, 09:34:53 PM: guys but there is a little problem if would be able to convience that guy it wont bring any change to sindh becoz he is the head in punjab only :wah
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sharmin on December 31, 2008, 09:36:50 PM: I really hope that they can get Ferriscan in Pakistan, it would have such a great impact. Without ferriscan or SQUID one has to guess at what the iron levels really are.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: nice friend on January 01, 2009, 12:13:49 PM: i hope that it will happen in soon future .. it will b great development for Pakistani thals if it happens....

Umair
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Zaini on January 01, 2009, 04:52:36 PM: Even if it starts in Punjab it would be great,coz we can travel to islamabad or anywhere else in Punjab.

Zaini.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on January 02, 2009, 12:38:55 AM: Hello all...

It's nice to come back to some good news! DJ, is there anything I could do to assist you in your talks/plans to setup FerriScan in Pakistan? Let me know if you need FerriScan information or a proposal from our company to facilitate your local discussions.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: diskjockey on January 05, 2009, 09:07:39 PM: thanks mam for ur concern . i surely need ur help .send me all the info regarding feriscan on djockey83@gmail.com
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on January 06, 2009, 05:02:10 AM: Hi DJ,

I have sent the FerriScan information to the email add you have provided. Please let me know if you haven't received it. Thanks.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Danielle on January 21, 2009, 07:07:28 AM: Hi, Sylvia. :)

I live in Long Island, New York. Can you tell me where the closest FerriScan is to me, and how I can go about getting it done?
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Stanza on January 21, 2009, 06:05:41 PM: Hey Danielle,

I was finally able to contact the person at Boston Childrens Hosptial who sets up appointments for the Ferriscan. Her name is Jennifer Braunstein. She is wonderful!!! Helped me to get all the approvals I needed to get the appointment and health insurance approvals. I will be going up there on Feb. 4th. I will let you know how it goes for me.

Joan
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Andy Battaglia on January 21, 2009, 06:29:04 PM: Weill Medical College of Cornell University 416 East 55th Street New York New York +1 212 746 6801
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Danielle on January 23, 2009, 11:18:19 PM: Thank you, Joan. I'd love to hear how it goes! :)

Andy, they have it right here in New York at Cornell? That's awesome! I need to get it done soon. Thank you! :hugfriend
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on February 02, 2009, 08:08:18 AM: Hello everyone, I apologise for the late replies. I was away on holidays and just got back to work today hearing good news from Joan getting a FerriScan appointment in Boston!

Danielle, the center at Cornell was previously setup for a clinical trial. After the trial, they didn't want to continue with the service. A upside to this is, we are currently setting up FerriScan at State University New York (SUNY) and we are in the agreement stage (just pending them to return the signed agreement). You could try to get an appointment there when FerriScan is available.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Bostonian_04 on February 03, 2009, 02:27:37 PM: Joan,

We go to Boston Childrens Hosptial for my daughter's Thal care. Jen Braunstein is the R/N who is vey helpful and approachable. My daughter had the MRI last year at Boston Children's. They did anethesia....we were very scraed but everything went fine. the Drs and nurses at the MRI center is also very helpful. All the best to you.....
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on February 13, 2009, 12:54:59 AM: Hello,

Joan, how did your FerriScan go at Boston? Please share your experience with us. Also, have you received the results from Dr Braunstein? Hope to hear from you soon.

Bostonian_04, I hope FerriScan had helped you and the doctors manage your daughter's therapy better. The reason why anaesthetic was used was to prevent too much movement in the MRI scanner. I believe your daughter is young and we all know young children can't stay still for long. Too much movement may compromise the quality of the data images which may affect the result of the analysis.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on February 23, 2009, 12:53:40 AM: New FerriScan Centres

Hello all,

Please note that there are a couple of new FerriScan centres setup recently.

1) Westmead Hospital
Crn Hawkesbury & Darcy Roads
Westmead, NSW 2145
Australia

2) SUNY Upstate Medical University Hospital
750 East Adams Street
Syracuse, NY 13210-1834
USA

Please contact your local treating clinicians if you are interested to have a FerriScan. A referral letter is required prior to you have a FerriScan at the MRI centres.

Thank you.

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on March 27, 2009, 06:19:30 AM: New FerriScan center in Michigan

Hello to all

Please be informed that there is a new FerriScan center setup recently.

Spectrum Health Radiology Services
100 Michigan St NE MC046
Grand Rapids
Michigan 49503
USA

Kindly note that FerriScan is a referral service. Please discuss with your treating clinician if you are interested to have a FerriScan.

Thank you.

Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Canadian_Family on March 27, 2009, 02:06:14 PM: Sylvia,

Thank you for keeping in touch with us.

Regards.
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on May 29, 2009, 07:19:53 AM: Hello everyone,

I hope everyone is keeping well and safe. I thought I would send all of you a quick update on what's happening in the world of FerriScan.

As winter approaches in Perth, Westen Australia, the heat is up on the FerriScan development that we are undertaking currently. We have commenced on with the FerriScan Rapide study in view to reduce the MRI scanning time. The standard FerriScan takes approximately 25-30min. The FerriScan Rapide once validated will take approximately 10-15 mins, reducing the scan time by 50%!

Once this service is launched, patients no longer needs to spend a long time in the MRI scanner. This also helps to reduce the MRI scanning cost charged by the hospital/imaging center.

Resonance Health is also looking into offering a cardiac T2* analysis service. We have received feedbacks from the clinical communities that a cardiac T2* measurement is essential even though patients are well-monitored. We are reviewing the relevant regulatory issues and we hope that we could offer a new regulatory approved, quality service to the clinical communities soon.

Our Chief Scientific Officer, Prof Tim St Pierre who is also one of the founders of FerriScan was invited to present at the International Thalassemia Day conference (6-7 May) in Cairo, Egypt. Prof St Pierre even had the honour to be interviewed by Nile News and Egyptian Satellite Channel. He was thrilled to be on Egyptian national television!!!

To all our Egyptian friends out there, if you have seen the interview on TV and you know where it is available online, please send me the link as all of us in the office would like to view it too.

At the same time, we would like to hear from you. If you have had a FerriScan before, we would like to hear your experience. Please feel free to share your comments. We can only improve from the feedback you give us. If you do not wish to share your personal experience in the open, feel free to drop me an email at sylviag@ferriscan.com

Stay tune for more updates from Down Under. :wink

Cheers
Sylvia
Title: Re: FerriScan : Non-invasive measurement of liver iron concentration
Post by: Sylvia on September 30, 2009, 05:22:19 AM: Dear Friends

I am delighted to announce that the FerriScan Rapide service has been launched officially.

The launch of FerriScan^®Rapide delivers a 60% reduction in MRI scan time for patients without impacting the accuracy and precision our customers have come to expect. A significant reduction in scan time (to approximately 10 minutes) will also make the FerriScan^® test more accessible to paediatric patients who previously may have required sedation.

The launch took place at the Whittington Hospital on 25 Sep 2009. The Whittington Hospital in London has become the first medical site in the world to provide the FerriScan Rapide service.

The FerriScan Rapide service will be slowly rollout to other MRI centers around the world.