Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Andy Battaglia on January 02, 2008, 04:27:39 PM
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I just ran across this and wondered if any of our members in Pakistan are aware of this and if anyone has applied to take part in this project. This project's advisory board includes Dr Lucarelli and Dr Sodani, who performed the bone marrow transplant for Khalifa's son, Abdulwahab.
From http://www.cure2children.org/?q=node/122
HLA-matched related transplantation for thalassemia major: A project to support a stem cell transplant network in Pakistan....The Cure2Children Foundation was established with the main objective of supporting children with cancer and severe hematological diseases by offering data management, training, professional advice and financial support for the transplant itself as well as for familiy support programs.The aim of this project is to provide financial and professional support for a total of 30 HLA-matched transplants in low-risk needy patients to be performed in 5 selected institutions located in different major cities in Pakistan (see above). Shared vision and principles will be the foundation of each institutional partnership. Consensus agreements and treatment protocols will be under the responsibility of a physician designated by each institution who will act as the local principal investigator and liaison with the Cure2Children Foundation. Publication policies give appropriate recognition and visibility to each participating center and every relevant contribution.
The project will be carried out over a two-year period consisting of a training-preparation phase of 6 months-1 year, depending on each single set up, another 6 months operational phase aiming at performing 1 transplant procedure per month, and a post-transplant follow up period no shorter than 6 months for each case.
The goal of the project is to obtain at least an 80% thalassemia-free survival at 1 year post transplant in low-risk patients after HLA-matched sibling transplant.
To obtain this result major emphasis will be given to nursing personnel training, availability of drugs and diagnostic procedures within the network, well-defined procedures and clear order sheets minimizing prescription errors, close daily contact among professionals in participating institutions, structured family support programs assuring continuity of care for the entire peri-transplant period, and well organized knowledge management and communication tools.
Proposed eligibility criteria
* No independent means to cover the expenses of transplantation.
* Clear understanding of the risks and benefits of transplant (a brochure and consent form in the appropriate language will be provided), at least one family member should be able to read.
* Informed consent to HLA-typing and possible transplantation.
* Written approval of the responsible physician.
* Written approval of the psycho-social evaluator.
* Patients younger than 8 years, with no major infectious diseases (HIV, Hepatitis B or C, Tuberculosis, Malaria, etc...)
* No hepatomegaly and normal liver sonography.
* Creatinine, bilirubin and transaminase less than twice normal values, normal echocardiogram and chest x-ray, normal performance scale (see appendix).
* Institutional commitment to sharing patient data according to privacy regulations.
The target date for Patient selection and evaluation is January 2008, so I would suggest anyone interested contact them as soon as possible. Contact info for the Foundation is below.
Cure2Children Foundation
Via Marconi n°30 Marconi World Office
50131, Firenze
Italy
Tel.+39 055 5537111
Fax +39 055 5520961
Information
info@cure2children.org
Website
Luigi Clemente
luigi.clemente@cure2children.org
Family Support Program and International Fundraising
Adina Salehi
adina.salehi@cure2children.org
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Wow!
This is indeed a great news for the young Thals. in Pakistan.
All I know about this web site is that they have pictures of JSF in the gallery of their Italian section :biggrin (You can see my doctor with the glasses standing on the left with an Australian Doctor which at first glance I thought was Andy! :grin ) I was searching about references to JSF on the net when I joined it several months ago and found this site.
I will tell about this BMT offer to my doctor and hopefully someone can benefit from it.
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This is indeed a very good project. If successful, it will create opportunities for many patients in Pakistan. I would not mind to know how they have progressed so far.
Thanks
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Visit to the Pakistan Institute of Medical Sciences
added Wed, 16/07/2008 - 14:27, modified 26/07/2008
by Lawrence Faulkner
It’s the second time I am at the Pakistan Institute of Medical Sciences (PIMS), the largest governmental academic hospitals in Islamabad and one of the main medical institutions of the country. In February 2007 I visited the Thalassaemia and Heamophilia Centre and met Dr. Tahira Zafar, its Director. I was very impressed by her work and invited her to the workshop we organized in Siena last March.
On July 2nd at 8:30 I give a seminar on “Stem cell transplantation: Summary of current status and prospects in low-resource settings”. Professor Anwar Ul Haque, Director of Pathology, greets us very kindly together with Professor Khalid Hassan, Director of Haematology. The lecture hall is crowded and we have a nice discussion at the end of my talk. Dr Abdul Majeed Rajput, Chief Executive of PIMS, is also present.
Later in the morning Professor Mumtaz Hassan, Chief of Peadiatrics, very kindly summarized for Sadaf and I the activities of the Children’s Hospital and showed us the general wards, neonatal and paediatric intensive care, outpatient department and library. The Children’s Hospital is a large clinical facility with 250 beds and all major paediatric medical and surgical subspecialties.
Three children are admitted in the paediatric intensive care unit: one with a head trauma, the second with a coagulation problem induced by a snake bite and the third with a thrombosis of a major intracranial vein. The paediatric inpatient service is made of two clean and well organized general wards including single rooms with private bathrooms. The premises seem appropriate to provide quality care for paediatric bone marrow transplant recipients. Given the large patient load of the Children’s Hospital, both physicians and nurses with intensive care training and experience with haematological disorders are available as well as a large number of medical trainees. Building a suitable team seems feasible. Dr. Lubna Neseem, the Blood Bank Director, shows us were donor blood is collected, tested and processed. Beside the basic screening tests (HIV, hepatitis B and C, etc…) they also routinely screen all blood donors with the rapid test for malaria. The blood bank seems to have most basic requirements to support the start up phase of a BMT program.
Professor Shagufta Hussain shows me the Microbiology Laboratory and we discuss issues related to the diagnosis and monitoring of common germs and tuberculosis, as well as opportunistic viral and fungal infections. We discuss the basic requirements to set up a BMT program with Professor Khalid Hassan as well as with Dr. Neseem and Professor Hussain.
On July the 4th we are again at PIMS for a meeting in which I present a brief report including my recommendations, a Memorandum of Understanding draft, as well as BMT centre checklist derived form the standards of the International Society for Bone Marrow Transplantation and Cell Therapies (JACIE). The meeting is brief and to the point. Dr Abdul Majeed Rajput, Chief Executive of PIMS, seems very interested in setting up bone marrow transplantation at his institution and commits to evaluate timely all relevant financial and logistical implications with his staff and with government health authorities.
Press
Pakistan Institute of Medical Sciences may have stem cell and bone marrow transplantation centre, Pakistan Daily.
PIMS to set up stem cell, bone marrow transplantation centres, Daily Times.
i found on the site www.cure2children.org
i think it is wat i menitoned in http://www.thalassemiapatientsandfriends.com/index.php?topic=1838.0;highlight=pims
under the subject :
PIMS may have stem cell,bone marrow transplantation centre
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Umair,
This is indeed a good news that will decrease the cost for BMT and/or CBT for local patients, but keep in mind that it is "not a NEW" breakthrough. Furthermore there could be an issue of quality compared to transplants done in Italy etc.
However, we must be optimistic and keep hopes high for a high success rates :)
I wish P.I.M.S all the best as it is indeed the best hospital for the twin cities.
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sorry for being late to reply on this topic .. but after taking a long time to reply i still have no words ..... only have to say ::
yeah me too ... hoping that it will be best in quality as italian or anyother ... hope to have bmt in my country .... safe and secure BMT ...
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I just ran across this and wondered if any of our members in Pakistan are aware of this and if anyone has applied to take part in this project. This project's advisory board includes Dr Lucarelli and Dr Sodani, who performed the bone marrow transplant for Khalifa's son, Abdulwahab.
Prof. Lucarelli and Dr. Sodani have been involved in the beginning of the project. Since August 2010 they are no more members of the advisory board.
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Furthermore there could be an issue of quality compared to transplants done in Italy etc.
However, we must be optimistic and keep hopes high for a high success rates :)
The results are comparable to the transplants done in Itay.