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55097 Posts in 5864 Topics by 6146 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: THAL Major Research - USA Participants Needed forTelephone Interview  (Read 11885 times)
Andy Battaglia
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« on: April 19, 2006, 11:33:35 PM »

I have been asked to post about this follow up to a previous research project on oral chelators, specifically Exjade. This survey is open to US residents only and is open to thal majors or the parents of majors who are underage. They are looking for patients who have started on Exjade in the past 5-6 months or those on desferal considering Exjade.

This type of research is very important in terms of drug companies understanding what it is patients want and don't want from their medicines. I would greatly recommend that anyone eligible does take part in this survey. What you have to offer can be of benefit to your fellow patients around the world. Those selected as eligible will receive a monetary compensation of $125 for their time. I think it is of great benefit to us as a group if we cooperate with surveys of this nature. We have been attracting great interest from the medical related industries and that is turning into help for people in our group. One recent example are the needle sets donated by Norfolk Medical for me to take to the Maldives in May. The needles arrives today and they are a high quality product that are packaged with a tegaderm dressing. I think it's a great sign that these companies are becoming aware of our existence and offering help where possible. It would be really great if some company that manufactures leukocyte filters would make a similar offer. 

I won't go into details now, but Hall and Partners has also offered to help us in a way that will mean a nice improvement to our site.


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THAL Major Research - USA Participants for Telephone Interview

Hello Board, my name is David Horn and I am a researcher at Hall and Partners USA (www.hall-and-partners.com), a healthcare brand and communications strategy research company in the US.   

A major pharmaceutical company has appointed us to conduct telephone interviews with Thalassemia Major patients (either adult patients or caregivers of minors) in order to address views on long term dangers of iron overload and issues patients may face in converting to or complying with oral therapy.   The telephone interview will last approximately 40 minutes, and can be scheduled at your convenience between April 24th and May 19th.  Your participation will be confidential, meaning that confirmation of your participation by name will not be reported to our client or linked to the analysis for this project in any manner.   

Specifically, we are looking to speak with the following Thalassemia Major patient types:

Those who have switched from Desferal to Exjade in the past 5-6 months (unfortunately we cannot accept those who participated in clinical trials for Exjade)   
 

OR

 

Those who are aware of Exjade but have not yet switched and are currently on Desferal
 

The study is open to anyone over the age of 18 who lives in the United States and meets all screening conditions.

In gratitude of your participation, we are offering an honorarium of $125, which would be paid directly to you by check.

If you or someone you know is a likely candidate, please feel free to contact me directly to be screened and set up an appointment: d.horn@hall-and-partners.com or 703 528 1626. 

Of course please feel free to ask any questions you may have regarding the research. 

Thank you in advance and I look forward to hearing from you.

David Horn

Hall & Partners, USA

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Andy

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Danielle
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« Reply #1 on: April 20, 2006, 12:08:49 AM »

Thank you, Andy.  I just emailed Mr. Horn.  Hopefully I'll be eligible for the interview.  I'll let you know what happens.   
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« Reply #2 on: April 26, 2006, 01:25:26 PM »

Ok, well after a few days of playing phone tag, David and I finally spoke, and it turns out that I qualify for the study.   

Someone will be getting in touch with me soon to set up a time for the hour long phone interview.  I'll let you guys know what happens.   
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« Reply #3 on: May 13, 2006, 11:35:06 PM »

Ok, well I did the telephone interview on Thursday.  It was quite easy, in fact.   

A gentleman, named Ari Shapiro, conducted the interview.  He was professional, and very nice.  You may actually see him around the forum one of these days, since he told me he may sign up.

I encourage everyone to do this interview.  Whether you are taking Exjade or not, you are capable of applying.  Novartis is sponsoring them, so they are trying to get good and bad info about Exjade.  Maybe if Novartis hears about how difficult it is to get Exjade, because it's so expensive, they will do something about it.   
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Danielle
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« Reply #4 on: May 15, 2006, 03:07:08 PM »

I'm just letting you guys know that I received my check for $125.00 (US) today, so for those of you that may be skeptical, this survey is legitimate.   

I'm actual surprised at how quickly it arrived.  Four days?  They said it would be a couple of weeks.  Shocked
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« Reply #5 on: May 22, 2006, 07:50:57 AM »

I'm just letting you guys know that I received my check for $125.00 (US) today, so for those of you that may be skeptical, this survey is legitimate.   

I'm actual surprised at how quickly it arrived.  Four days?  They said it would be a couple of weeks.  Shocked

PARTY!!! PARTY!!! PARTY!!!
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Miaki
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« Reply #6 on: May 22, 2006, 09:22:29 AM »

Hi Guys,

Here in Australia a similar phone survey and interveiw system took place and they paid patients for their time. They also paid our national society a certain fee for each patient that participated.

I think this survey was at an international level.

Can't wait for the outcome......fingers crossed they take note in what we all said and make this new drug free or at least very affordable to ALL patients.

Miaki
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Andy Battaglia
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« Reply #7 on: May 22, 2006, 12:14:38 PM »

Shikha,

That is the most excellent point. Please everyone, take advantage of this opportunity. You will not only be helping yourself but you have the chance to say some words for patients everywhere who need our help in getting exjade at an affordable price.

The time for skepticism about these research projects is gone. They are for real and have the potential to help patients have their voices heard in a very real way.
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Andy

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« Reply #8 on: May 22, 2006, 11:59:36 PM »

Yes, that's a valid point Andy!

Those who have the opportunity to get themselves interviewed, please! keep in mind that you have to represent us too who can't get such an opportunity.

I would love to tell Novartis to supply Exjade in developing countries too with an affordable price. I just want them to interview me (email or chat session seems a good idea.) without concern of any cash reward. I just want them to make Exjade their biggest success ever!

Hmm.... Group Chat seems to be the best idea! Can anyone of you who has a pending interview tell the guys of Novartis to schedule a chat session on this site with all the members?

Please do ask this one!
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« Reply #9 on: January 23, 2007, 08:26:08 AM »





I would love to tell Novartis to supply Exjade in developing countries too with an affordable price.


   I hope it will materialize soon especially here in our country.
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« Reply #10 on: January 24, 2007, 01:23:29 AM »

Well,

Only a few days left till our chat. I sure hope that someone from Novartis joins in.

Take care, Peace!
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« Reply #11 on: May 21, 2007, 10:45:46 PM »

I hope it would happen also here in our country..co'z right now exjade is out in the market but not in that reasonable price...
The main reason why here in the Philippines ,the ratio of reaching adulthood of a thal patient is poor, usually inadequate chelating thearapy of their iron in the body leads to comlications as we all knew that..
We're very thakfull before to the novartis for subsidizing the price of DESFERAL at very reasonable and more affordable they give.
We're hoping they would do the same to EXJADE..
It would be a great news for thal patients in developing country like here in the Philippines co'z the're giving hope for thal patints like me..
More power and Godbless!!!
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