Friday, May 2, 2014

A million donors needed (registry for stem cells)

Garvit Goel is a lucky kid, he got a match for blood stem cells from a stranger and was saved from a life of pain. Wonderful news and hopefully more people will register with Datri (and the Tata Memorial registry) and qualify to save lives (too easy).

Given the complications caused in South Asia due to endogamy, health experts believe that at least half million donors required. NGOs should consider partnering with religious bodies (similar to the intervention for polio drops) to remove myths about stem cell donation (will cause pain and weakness in donors).
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A two-year-old Delhi boy suffering from thalassemia got a new lease of life after a Bangalorean donated his blood stem cells to him.  
This is the first reported case in India of a thalassemia patient receiving blood stem cells from an unrelated donor.


Garvit Goel was advised to go for a blood stem cell transplant a year ago. None of his family members qualified to be potential donors. That's when Sumeet Mahjan (34), a software professional from MindTree, stepped in.

For Sumeet, the turning point came in 2011 when his colleague's 11-year-old son was diagnosed with leukemia. MindTree requested Datri, an NGO working on networking stem cell donors to help people suffering from blood disorders, to look for a potential donor. Datri conducted a workshop and awareness campaign at MindTree to make techies aware of the life-saving benefits of stem cell donation. The boy died, but the sustained campaign ensured many registered their names for blood stem cell donation.

"In January 2013, I was asked by Datri if I could donate stem cells for a two-year-old thalassemia patient from Delhi. I was chosen as a potential donor. After consulting Datri and the doctors, I felt responsible and went ahead with donation," Sumeet told TOI.

For five days Sumeet was given growth factor injections. He then underwent a half day's non-surgical procedure. "Garvit underwent the unrelated peripheral blood stem cell transplant in April 2013 and is now free from thalassemia and saved from the trouble of constant blood transfusion. We need 3-5 million blood stem cells per kg of recipient's body weight. Over 150-200ml of blood was used," says Dr Dharma R Choudhary, director, BLK Super Specialty, New Delhi.

As per the rule book, the recipient's details cannot be disclosed to the donor till a year after the transplant. In March 2014, Sumeet met Garvit in Delhi.

"I wanted to see him. After a year, I got the chance. His parents were very humble and thankful. I was satisfied that Garvit was healthy and normal like any other kid of his age," says Sumeet, himself a father of two. He was backed by his family.

Thalassemia is caused by variant or missing genes that affect the production of haemoglobin. Nearly 12,000 babies are born in India every year with this disorder. In fact, 10% of the world's thalassemia patients are from the Indian subcontinent, with 3-4% of them being carriers.

With very few registered donors in India, the possibility of finding a genetically matching donor for an Indian anywhere in the world is low. Datri Blood Stem Cell Donors Registry is working towards creating a wide and diverse database of potential donors who can be accessed by any patient, living anywhere in the world, in need of life-saving blood stem cells.

Datri has facilitated 51 transplants.
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Currently, there are four registries in India but only two are functional - DATRI, a south India-based stem cell registry started in 2009 which has around 56,000 registered donors, and Marrow Donors Registry India at Tata Memorial Hospital in Mumbai.

"As a result of evolutionary history, endogamy and consanguinity, populations of the Indian subcontinent demonstrate high genetic differentiation and extensive sub-structuring. Ancestry is unique to India," said Dr N.K. Mehra, head of Immunology and Immunogenetics at the All India Institute of Medical Sciences (AIIMS).

"Indian groups have inherited different proportions of ancestry from the ancestral North Indians and the ancestral South Indians. Hence, consistent with social history, northern regions show closer affinities with Indo-European speaking populations of central Asia as compared to those inhabiting southern regions."

Mehra said the southern Indian population may have been derived from early colonizers arriving from Africa. "This genetic matching is difficult to find for an Indian donor," he said.

A transplant from a healthy unrelated donor replaces flawed stem cells with healthy ones that can generate healthy red blood cells and cure Thalassemia. The goal of the transplant is to rebuild the recipient's blood cells and immune system and cure the underlying ailment, and avoid or obviate the need for frequent blood transfusions.

"The existence of a large variety of alleles and haplotypes (genetic components), both unique and representative of other ethnic groups in the Indian subcontinent, poses additional challenges in the transplantation context, particularly with regard to hematopoietic stem cell transplantation," Mehra said.

Even after patients find suitable donors, there are low chances of the donor turning up due to myths related to donation like pain and weakness, doctors claimed.

For a successful transplant, the donor and recipient should have a matching set of genes known as Human Leukocyte Antigens (HLA). At least one third of patients have a chance of finding an identical set of HLAs within their family while two-thirds are dependent on unrelated donors.
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Link: http://www.dailymail.co.uk/indiahome/indianews/article-2600057/Wanted-half-million-donors-Indian-patients-miss-life-saving-stem-cell-therapy-lack-matches.html
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regards