Non-profit

Celebrating World Health Day with Dartri – India’s Largest Registry for Unrelated Donors

Datri aims to establish a registry of committed HLA-type donors.

Over the last five years, the number of patients seeking BMT(Boone Marrow Transplantation) has grown in India. According to the Indian Stem Cell Transplant Registry (ISCTR) 2017 report, about 2000 BMTs are conducted annually across 75 facilities, with over 1000 allogeneic. In India, BMT centers have increased from 10 in 2005 to 75 in 2017. Alternative donor transplants are now being performed for children, mainly from haplo identical (half-matched) family donors (siblings, mother, father, uncles, aunts, and cousins), partially addressing the issue of donor shortage.

On this World Health Day, we talked with Sumati Misra, Head Of Medical Affairs at DATRI Blood Stem Cells Donors Registry. The nonprofit seeks to raise awareness of blood stem cell donation and recruit potential donors. Their vision is to establish a registry of committed, willing, Tissue/HLA-typed donors who are well-informed and willing to donate to any patient.

Q
What does DATRI do as an organization?

Sumati Misra: DATRI is India’s largest registry for unrelated donors. Since 2009, it has been in operation. We are an unrelated donor registry, which means that none of the patients our donors donate blood stem cells, are related. We require registries because many patients do not find a match within their families, and a registry is required to match the HLA of the patient and donor. In HLA, we match 10 traits; a perfect match would be a ten by ten or, in some cases, a nine by ten. Anything other than that isn’t a good idea. We also raise public awareness for the registry and stem cell donation.

You only need to register with us and be willing to donate your blood stem cells when you are a match. When we receive a request for a match from a patient or a patient’s doctor, my team and I search our database for a match. If a match is found, we counsel the donor to donate their stem cells.  We get a health check-up done on the donor, complete the donation process and transport the product to the patient’s treatment location. If the donor and the patient are willing to know the donor’s identity, then one year after the donation, we share information with them, but for the first year, it is kept confidential.

Q
How will you explain bone marrow transplantation in layman’s terms?

Sumati Misra: Bone marrow is cells that may transform into any type of blood cell, including red blood cells, white blood cells, and platelets. These cells are known as mother cells, produced in our bones, namely in the hip bone and pelvic girdle.

A doctor inserts a needle into your back and extracts these cells, just like shown in many documentaries. Bone marrow is collected in this manner.

These cells are called blood stem cells when extracted from the blood. Stem cell transplantation is an outpatient technique similar to platelet donation/leucocyte donation. When you’re matched with a patient who needs blood stem cells, blood stem cell collection only takes three to four hours of your time. More than 95% of collections now happen in this manner.

Q
What are the things to be kept in mind while becoming a donor?

Sumati Misra: We’ll look at it from two different angles. To begin with, you can only donate if you are in good health. So, if you’re not in good health, you won’t be able to contribute. Finding a donor within your family is possible in 25% of cases, implying that if you have five siblings, you may have a match within your family. However, since most of us belong to nuclear families nowadays, the chances of finding a match within the family are significantly slimmer.

We can’t ask a donor to donate if they aren’t healthy; therefore, to gift a life, you must maintain your health, not just for yourself but also for someone else you may be able to assist in their time of need. The other viewpoint is about today’s stress. We are aware of the fast-paced lifestyle and all the challenges we face. You are not serving yourself if you are not healthy; you must be honest with yourself.

We all have someone in our close family who is afflicted with cancer. According to recent data, the instances are on the rise, implying that we must take precautions to ensure we are prepared to respond and assist. We simply want people to recognize that the most important thing to focus on is what you’re doing to yourself; the rest will take care of itself.

Q
Why do you keep the donor’s identity private?

Sumati Misra: When someone needs to save a loved one’s life, they’ll do anything. If someone you care about requires a transplant, you’ll do everything you can to find a donor and have the job done correctly. This can also include financial considerations. It’s plausible, given that the patient is already in a financial bind. They are responsible for their treatment. Then you look for a donor who may be is in a better financial position.

If they are approached directly, things may not turn out the way the patient’s family wishes. So, to avoid such situations, we came up with this concept. In addition, to prevent being financially or emotionally blackmailed, we practice this. We don’t want to get into any situations like this. Also, we choose a one-year time frame because it takes a year for a patient to get entirely fit.

Q
What is your nonprofit’s vision for the coming years?

Sumati Misra: Our ultimate goal is to ensure that everyone in need of a donor has a chance to locate one. We now have over 2000 patients registered with us who have yet to find a match. Even though we have around 4.7 lakh donors registered with us, we still have over 2000 patients who do not have a match. Henceforth, our prime goal is to ensure that everyone looking for a match finds one.

Q
Would you like to give any message to our readers?

Sumati Misra: The higher the number of persons who register, the better the chance for a patient to find an unrelated match. So, we request you get the word out and encourage people to sign up. So, if you’re between 18 and 50 and in good health, don’t hesitate to sign up. You never know when you might be a match for someone in need. If you cannot register for any reason, then motivate your friends and family to register; each donor HLA typing costs INR 1800. Not everyone can afford the cost, so you can also sponsor donors or be part of the process.

In children with PID who have BMT, transplant-related mortality is still a big concern—reducing the long-term effects of chemotherapy and/or radiotherapy in young infants. Monoclonal antibodies targeting the host bone marrow would replace chemotherapy, allowing minimal chemotherapy during transplants. Another possibility is that gene therapy.

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