In a significant medical advancement, the National Institute of Immunohaematology (NIIH) in Mumbai, under the Indian Council of Medical Research (ICMR), has launched India’s first national rare blood donor registry. This pioneering initiative will serve patients with uncommon blood types—particularly those suffering from thalassemia and sickle cell disease—who require frequent blood transfusions.
Bridging Gaps Through Digital Integration
According to Dr. Manisha Madkaikar, Director of the ICMR-Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Nagpur, ICMR-NIIH is currently coordinating with the Director General of Health Services (DGHS) to integrate this registry with e-Raktakosh, the government’s existing blood availability portal.
As per a report in Business Standard, this digital integration will streamline access to rare blood types by connecting patients with matching donors and improving inventory management across blood banks nationwide.
India’s High Demand for Blood
India’s need for blood transfusions remains high due to widespread blood disorders, pregnancy-related complications, and accidental injuries. The Central Drug Standard Control Organisation (CDSCO) reports that over 4,000 licensed blood banks operate across the country, serving a population of more than 142 crore.
Dr. Madkaikar emphasized the pressing demand:
“Thalassemia alone affects 100,000 to 150,000 patients who require recurrent transfusions.”
She added that with 1,200+ daily road accidents, 60 million surgeries, 240 million major operations, and 331 million cancer-related procedures annually, India faces a critical and continuous need for blood supplies.
Importance of Minor Blood Group Antigens
While most Indian blood banks only match ABO and RhD antigens, the International Society of Blood Transfusion (ISBT) recognizes over 360 blood group antigens across 47 systems. Unfortunately, these minor antigens are rarely tested.
This gap leads to a risk of red cell alloimmunisation, which occurs when a patient’s immune system reacts to incompatible donor blood.
- In the general population, this happens in 1–3% of cases.
- Among thalassemia patients, the rate increases to 8–18%.
About 25% of immunised patients experience unsatisfactory transfusion support due to multiple antibodies or antibodies to high-frequency antigens.
Defining Rare Blood Groups
Rare blood groups typically include:
- Types that lack high-frequency antigens (found in fewer than 1 in 1,000 people)
- Types negative for common antigen combinations
- Those that display a null phenotype
Meeting the demand for these rare types is logistically complex and time-consuming. As Dr. Madkaikar noted,
“A patient’s need for rare blood can spark a national or even international search.”
Hence, establishing a centralized, well-maintained database of rare and extensively typed donors becomes essential.
Building the National Registry: A Collaborative Effort
India’s journey toward a rare blood registry began in 2019 when ICMR-NIIH received approval to develop a Centre of Excellence project. The project aimed to screen 4,000 regular ‘O’ group donors using advanced molecular techniques across four regions, in collaboration with:
- KEM Hospital, Mumbai
- PGIMER, Chandigarh
- MCH, Kolkata
- JIPMER, Puducherry
The effort successfully identified:
- 600+ donors lacking common antigen combinations
- 250 donors with extremely rare blood groups
- 170 donors with the Bombay blood group, one of India’s most needed rare types (120–150 units/year)
To support timely access, ICMR developed a web-based portal named the Rare Donor Registry of India (RDRI), enabling systematic requisition and supply of rare blood.
Future Plans: Scaling Up the Registry
Dr. Madkaikar confirmed plans to link RDRI with e-Raktakosh, encouraging blood banks across the country to contribute their rare donor data.
“Last month, we held a meeting with the DGHS to move forward with this integration,” she said.
A Broader Vision: India’s First Diabetes Biobank
In another landmark achievement, ICMR established India’s first diabetes biobank in Chennai last year. In collaboration with the Madras Diabetes Research Foundation (MDRF), the biobank collects and stores biological samples for scientific research into Indian-specific forms of diabetes. It aims to enhance disease understanding and support long-term public health strategies, under ICMR’s oversight.