Blood stem cell donor registry DATRI on their journey

Finding a blood stem cell donor to cure conditions such as thalassemia is now easier thanks to registries like DATRI.

July 31, 2015 04:51 pm | Updated March 29, 2016 12:30 pm IST - Chennai

01mp_Datri

01mp_Datri

Two years ago, when a five-year-old girl in Chennai was diagnosed with thalassemia, her parents were at a loss. Their child was subjected to painful blood transfusions every month and still couldn’t live a full life. Each day was fraught with tension and fear. They even tried having another child, their third, in the hope that her genetic type would match the new baby’s and a curative blood stem cell transplant could be done, but to no avail. Just when all hope seemed lost, they found an unrelated match through DATRI, a blood stem cell donor registry, and their daughter received a new lease of life.

Launched in 2009 by Raghu Rajagopal, DATRI, a non-profit organisation, has facilitated nearly 110 blood stem cell transplantations through unrelated donors. “It began when I was in the U.S. and someone I knew needed a blood stem cell transplant since she had leukaemia. However, since she was of an Indian-Pakistani origin, they couldn’t find her a match in the U.S. registries. We realised that ethnicity plays a very important role in genetic matching,” says Raghu. When he subsequently returned to India in 2005, setting up a registry was on his mind. Four years later, DATRI was officially launched, tying up with Dr. Nezih Cereb and Dr. Soo Young Yang of HistoGenetics.

“It was a further two years before we could facilitate our first blood stem cell donation, simply because our donor pool back then was very small and the matches, extremely rare. In cases of blood stem cell donation, it is not the blood group that matters but the genetic matching,” explains Raghu.

The first blood stem cell donation through DATRI — among the first of its kind registry in the country — was in April 2011, and by the end of the year, they had three such successful donations.

Blood stem cell donation is typically recommended for people with fatal blood disorders such as leukaemia, thalassemia, lymphoma and CDG among others. Chances for finding a genetic match within the family for patients with these disorders stand at just 25 per cent. Genetic matching is usually rare and that also narrows down the donor pool. Donors are usually registered between the ages of 18 and 50 and can continue to donate until the age of 61.

While awareness about the procedure and the need for such a registry is slowly improving, things were very different when DATRI was first set up. “Today, we have a presence in several Indian cities such as Delhi, Mumbai, Kolkata, Hyderabad, Bangalore, Pune and Ahmedabad, apart from volunteers in several others. We conduct regular donation drives with corporate companies, colleges and community centres, in a bid to enrol more donors onto our registry. Just this week, we enrolled 700 new donors in Kerala,” explains Raghu.

Those willing to become donors are required to fill a form with basic information about themselves and give a cheek swab, so DATRI can have their HLA typing (used to match a person with a donor for the bone marrow or cord blood transplant) done and feed it into their database. If and when a match occurs, the donor is contacted, and DATRI sends them for a master health check-up at a hospital to rule out any ailments or diseases. The donor is then put on medication for five days to increase the production of blood stem cells in their body, which are then harvested in a four-hour day-patient procedure.

“It is not a surgical procedure like it was earlier. These days, blood is drawn from the right arm of the donor, passed through a machine that harvests the blood stem cells, and sent back into the donor’s body through their left arm. It is a very safe and pain-free procedure,” says Raghu, adding that this procedur is called peripheral blood stem cell donation.

While awareness levels today are much better, DATRI finds that college-goers are usually the most willing and enthusiastic donor-volunteers. “One of the initial challenges we faced was the level of understanding of the procedure within the medical fraternity. Another hurdle we still face is the reluctance from the donor’s family to go ahead with the procedure; this we usually address by counselling the donor and family. At times, we also face a few infrastructure-related challenges, but then things are looking up. We are now looking towards reaching a stage where every patient of Indian origin finds a willing donor match,” smiles Raghu.

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