India gets its first "Marrow Donor Registry" formed
Announcement of the "Creation of First Marrow Donor Registry in India"; Prominent doctors from major international registries like UK, Europe, USA and Australia along with representatives from all the major transplant centres in India discussed important roadmap for moving forward, in making these registries viableTweet
-- Dr. Ashok Kirpalni & Dr. Sunil Parekh of Marrow Donor Registry India organised a seminar along with prominent doctors from major international registries like UK, Europe, USA and Australia along with representatives from all the major transplant centres in India at the Bombay Hospital. “Creation of First Marrow Donor Registry in India” was announced and important roadmaps for moving forward in making these registries viable were discussed during the seminar. (List of Speakers is attached below)
“Every year nearly 40,000 patients in India die because unrelated Marrow transplant facilities are not available in India”, said Dr. Kirpalani. “In the absence of viable Marrow Donor registries in India, a person of Indian origin faces two major problems. Firstly - The western registries have extreme paucity of matching volunteer donors for Indian patients, since Indians are genetically different from the western population; they need donors of Indian origins and Secondly - the rare Indian who does find a matching donor from these databases will have to go abroad for a bone Marrow transplant and incur heavy costs which ranges between 1–1.5 crores”, he explained.
“With the intention of eliminating these serious problems that our Indian patients encounter, we are setting up a Bone Marrow Registry having a national outreach in India. Our sole objective is to help patients with leukaemia (Blood Cancer), thalassemia and other blood disorders who are in need of a Marrow Transplant”, said Dr. Kirpalani addressing the media during conference.
The facility of unrelated Marrow Donor Transplantation is highly advanced in developed nations. In such countries, HLA typing and matching with Voluntary Unrelated Donors is well established. Currently, there are over 12 millions voluntary Unrelated Marrow Donors already registered worldwide. Their tissue typing (HLA typing) results are available in computerized databases. Patients from such countries can usually find a matching Donor and can have Marrow transplant done. But unfortunately in India the total number of unrelated voluntary donors is negligible. Hence there was a need in India to have a Marrow Donor Registries of its own, which naturally will have donors of Indian origin. Their tissue typing reports will be available to patients globally, thus helping patients from within India as well as Indians worldwide.
“We need to have 1 million voluntary altruistic donors. The major cost is of setting up a HLA tissue typing of the donors. Also substantial investment is required in computers, database information processing facilities to search throughout the local as well as worldwide registries as rapidly as possible. This task, working at the edge of medical technology, also requires staff of a high calibre”, said Dr. Sunil Parekh.
“The overall cost of such a venture will be a few thousand crores. Hence in the first phase, we are planning to establish registries with 1,00,000 altruistic donors who pledge to donate their bone marrow stem cells, which will need Rs. 75 crores within the next 5 years”, he added.
The implementations of the various processes have been accelerated by preparing a website and database program which is being done by M/s Syntel, audio/video presentations and M/s Mudra communications. Both the projects are also being sponsored by them respectively.
“We need the understanding and co-operation of large industrial houses and businesses as well as social organisation in order to achieve our goal without which this huge humanitarian endeavor will not be possible. Hence we take this opportunity to request one and all to come forward and lend a generous helping hand in saving the lives of those, where Bone Marrow Transplant is the only hope of cure”, said Dr. Kirpalani addressing all at the end of the seminar.