How ICMR's blood donor registry is saving lives of rare disease patients in India

New Delhi, June 21 (IANS) The Indian Council of Medical Research has initiated a Rare Donor Registry of India (RDRI) that is crucial in saving the lives of rare disease patients, including those with thalassemia and haemophilia, in the country.

According to the ICMR, the RDRI will also benefit patients with haemoglobinopathies like sickle cell disease; other bleeding disorders; and Primary Immunodeficiency Diseases, including those with T and B cell deficiency.

“Some people have rare blood types -- less than 1 in 1,000. This can make life-saving transfusions extremely hard to find, especially in emergencies," the ICMR said.

To develop RDRI, scientists at ICMR-National Institute of Immunohaematology (NIIH), along with KEM Hospital (Mumbai), PGI (Chandigarh), NRS Medical College (Kolkata), and JIPMER (Puducherry) created a database of over 4,000 carefully screened donors, tested for over 300 rare blood markers from across the country.

They "identified more than 1,000 rare individuals negative for common antigens and 128 very rare blood group donors," the ICMR informed.

The database will “help doctors find rare and specially matched blood quickly to help patients across India,” the apex research institute said.

The registry can help find rare matches, which include donors with ultra-rare types like Bombay, P-null, and Rh-null blood.

The RDRI will also enable safer transfusions. It matches blood for patients missing multiple antigens (common in thalassemia and sickle cell) to prevent complications.

Further, the registry uses special blood screening kits, which are tailor-made for Indian patients. It uses DNA tests (Multiplex PCR) to quickly identify rare blood types.

“This registry turns a nearly impossible search into a life-saving solution. With continued support, India can ensure that no life is lost due to the lack of rare blood,” the ICMR said.

The ICMR-NIIH is also planning to integrate the RDRI portal with e-Raktakosh -- a platform that currently provides information about blood availability, according to Dr Manisha Madkaikar, Director of ICMR-Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Nagpur.

This will not only enable rare blood group patients to trace blood banks and procure blood with ease, but will also assist the blood banks to manage their stock and donors through a centralised system.

--IANS

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