Present Activity of BMCAA & BMCDT

Bone Marrow Registry

Preamble:

The difficulty faced by a young surgeon in getting a match for a bone marrow transplant stimulated us to think of forming a standard bone marrow registry. This young man was suffering from myeloid leukaemia - a form of blood cancer. He had to struggle for months to find a donor and he has still not managed to find a good match! This made us look into why there is this difficulty in finding a match. The simple truth – our country does not have a donor registry worth talking about.

Vision:

To establish a comprehensive bone marrow registry that represents a wide spectrum of the genetically diverse south Asian population.

Mission:

Make a modest beginning and enroll one million Indians in this registry, to start with. Later it can be expanded to 3 million – the size that most experts feel would be a reasonable sized registry.

Present scenario:

Patients needing bone marrow transplant – mostly youngsters with different forms of blood cancer and some with benign marrow disorders – try and find donors from among their relatives. A few small registries do exist in Tata Memorial Hospital, Mumbai, in Chennai and in Bangalore. But they have very few donors to have any chance of getting a match. Most patients do not find a match and sadly, succumb to the disease.

What does it take to build a registry?

• Donors between 18 and 55 years of age willing to donate their marrow must be motivated and enrolled.
• Their blood groups and HLA typing have to be done – this costs about 1000 INR per person. The present rate for testing is quoted at 2000 INR – but we have access to a laboratory that has promised to do the test for 1000 INR.
• Once a few thousand donors are enrolled, we have to link up with other registries in the country. Eventually all registries must be merged to end up with one registry for the country. This would be the registry that we propose to have, because it will have thousands of donors more than the existing registries.
• This registry can then be linked with registries in other parts of the world.

What needs to be done?

• We need to have funding for testing once we start enrolling potential donors. Funding is also required for the campaign to create awareness about bone marrow donation.
• Celebrities will have to be involved and print and visual media have to be stimulated to come on board the awareness campaign.
• Region wise blood and buccal smear collection centres have to be identified to collect samples from donors.
• The samples have to be transported to the laboratory in Bangalore for processing.
• The details of donors including demographics, contact details and the blood group and HLA typing have to be stored.
• The same centre that stores the donor details also undertakes to do a match if a request is made by a patient needing a marrow transplant.

Why is this important?

• Thousands of patients are dying because of lack of a donor registry; it is impossible for individuals to pay for the tissue typing of several hundred donors needed to find a match.
• India is lagging far behind the west and China in the formation of a registry.
• A good registry in India can help thousands of patients with south Asian origin, in India and all over the world. It will be a great contribution to society.