Finding rare blood just got easier: India launches national registry for hard to find blood types

Indian blood banks usually test only ABO and RhD antigens, ignoring many of the 360+ ISBT-recognized antigens—raising alloimmunisation risks, especially for thalassemia patients

Published Jun 22, 2025 | 6:45 PMUpdated Jun 25, 2025 | 6:38 PM

Haemophilia

Synopsis: In a first for India, ICMR’s NIIH has launched a national rare blood donor registry to help patients with conditions like thalassemia and sickle cell disease access compatible blood through a centralized system

In a first for India, the National Institute of Immunohaematology (NIIH) in Mumbai under the Indian Council of Medical Research (ICMR), has launched a national registry for rare blood donors.

This initiative aims to bridge a long-standing gap in India’s healthcare system: helping patients with rare blood types, particularly those with genetic conditions like thalassemia and sickle cell disease, who require repeated transfusions.

The newly created Rare Donor Registry of India (RDRI) will make it easier for such patients to access compatible blood, often difficult to source, through a centralized system that identifies and catalogs rare donors across the country.

Linking technology and urgency

The NIIH is now working with the Director General of Health Services (DGHS) to integrate the rare donor registry with e-Raktakosh, the national portal that tracks blood availability across licensed blood banks.

“This integration will help people with rare blood groups to trace blood banks and procure the right units more efficiently,” said Dr Manisha Madkaikar, Director of the ICMR-Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Nagpur. “It will also assist blood banks in managing their stock and donor lists through a centralized system.”

India, with over 4,000 licensed blood banks for a population of more than 142 crore, faces one of the world’s highest demands for blood transfusion. Dr Madkaikar pointed to the country’s heavy burden of blood disorders, pregnancy-related complications, and the sheer number of surgeries and road accidents as key reasons.

“Thalassemia alone contributes to nearly 1 to 1.5 lakh patients who require recurrent transfusions,” she said.

Each day, India reports over 1,200 road accidents. Every year, the country performs 60 million surgeries, 240 million major operations, 331 million cancer-related procedures, and handles 10 million pregnancy complications — all of which fuel the urgent demand for blood.

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Beyond ABO and Rh: The science behind rare blood

Most Indian blood banks only match blood donors and recipients by ABO and RhD antigens. But the International Society of Blood Transfusion (ISBT) recognises over 360 blood group antigens spread across 47 systems — many of which are not routinely tested in India.

This gap in testing can result in red cell alloimmunisation — when a recipient’s immune system attacks transfused red blood cells due to mismatched minor antigens. In the general population, this occurs in 1–3 percent of cases, but jumps to 8–18 percent in thalassemia patients, according to Dr Madkaikar.

“About 25 percent of immunised patients experience poor transfusion outcomes because of multiple antibodies or antibodies to high-frequency antigens,” she explained.

What counts as a rare blood group?

Rare blood groups are typically defined as those lacking high-frequency antigens (present in fewer than 1 in 1,000 people), or those that are negative for common antigen combinations, or show a “null phenotype” where certain antigen systems are absent altogether.

“For patients with such blood groups, finding a match can be a long and complex process — sometimes extending beyond local or even national boundaries,” Dr Madkaikar said.

To tackle this, a well-maintained, extensively typed donor registry becomes essential. Globally, 27 countries already operate rare donor registries. Until now, India was not among them.

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Laying the groundwork

The foundation for India’s registry was laid in 2019, when the ICMR-NIIH received approval for a Centre of Excellence project to screen 4,000 ‘O’ group donors across India using advanced molecular assays. The initiative involved major hospitals like KEM Hospital (Mumbai), PGIMER (Chandigarh), MCH (Kolkata), and JIPMER (Puducherry).

The results were promising: over 600 donors were found to lack specific antigen combinations, 250 were classified as having very rare blood types, and 170 donors belonged to the Bombay blood group — one of the most sought-after rare blood types in India, with a national demand of 120–150 units per year.

To facilitate access, a web-based portal was also developed for systematic requisition and timely provision of rare blood to patients.

“We recently held a meeting with the DGHS to expand this registry through integration with e-Raktakosh,” dr Madkaikar confirmed.

India’s first diabetes biobank

This move by ICMR is part of a broader push towards strengthening India’s biomedical infrastructure. Last year, the council also inaugurated India’s first diabetes biobank in Chennai, in collaboration with the Madras Diabetes Research Foundation (MDRF).

This facility stores biological samples to aid research on diabetes and related disorders, aiming to build a deeper understanding of how the disease manifests in Indian populations.

(Edited by Ananya Rao)

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