The stem cell registry was first proposed in 1970 to match blood donors for transfusions. The first dedicated bone marrow registry was established in 1974 in the UK to find a donor for Anthony Nolan. While Anthony died without a transplant, the registry has helped many others. In 1989, the first global stem cell donor registry was formed with 8 registries and 150,000 donors. Stem cell registries maintain databases of voluntary donors to match with patients needing transplants. They play a vital role as thousands of Indian patients die each year due to the lack of matched donors within the country or in international registries.

1. Stem cell registry

2. History of Stem Cell registry
• The concept of registries dated back to 1970, when
Prof. Dr. Jon J. van Rood proposed in Munich to set up a
file of HLA typed volunteer blood transfusion donors to
be used for HLA matched platelet transfusions and
bone marrow transplantation.
• The first active dedicated bone marrow donor registry
was, the Anthony Nolan Trust, United Kingdom.
• The Charity was initially set up in 1974 to find a donor
for Anthony Nolan, born in 1971 with an immune
deficiency disease, Wiskott Aldrich syndrome.

3. History of Stem Cell registry
• Anthony died in 1979 without a transplant,
but numerous patients have benefited from
his legacy
• It was Shirley Nolan’s intent to offer hope of a
donor to any patient in need of a blood stem
cell transplant in any part of the world.

4. History of Stem Cell registry
• Jon J. van Rood created a collaboration
between several bone marrow donor
registries worldwide to produce the global
search engine for donors, “Bone Marrow
Donors Worldwide.
• In February 1989 the first edition was
distributed, which contained the donor files of
eight registries with a total of 150,000
volunteer stem cell donors

5. What is a Stem Cell Registry
• Stem cell registry acts as a communicating
medium between voluntary stem cell donor
and patient in need of stem cell transplant
• To provide a, comprehensive electronic
database that is accessible to patients in need
of a stem cell transplant

6. Need and Scope of stem cell registry
• Every year 40,000 patients die because of not
finding a voluntary stem cell donor in India.
• Chances of finding a successful match with in a
family (related donor) varies from 20-25%
• Indian donors find very scarce representation in
international registries.
• Probability of finding an unrelated donor in India is
1:20,000

7. Need and Scope of stem cell registry
• The United States, which has a population of
317 million, has 22 million registered stem cell
donors while there are only 40,000 stem cell
donors registered in India, which has a
population of over 1.2 billion.
• Thousands of patients in India die merely
because there are not enough stem cell
donors in the country.

8. No HLA-matched donor?
“Donors of Indian origin are
represented poorly in the international
registries like NMDP and BMDW. When
Indian patients need unrelated-
allogenic transplants and they search
the database, they invariably do not get
HLA matched donor”
K. Ghosh et al. Common human leucocyte antigen haplotypes in Indians – its
implications in finding unrelated compatible bone marrow donors. Transfusion
Medicine, 2002; 12:43-48

9. 0.18 million donors
with Australian
registry
World Wide
264,873,946
Marrow donors
Registered
0.8 million donors
with UK
4million donors
with Germany
6.5 million Donors
with, USA
0. 19 million
with France
As per BMDW (Bone Marrow Donor Worldwide) in 2015
0.32 million
donors with
Taiwan
0.05million
with Belgium
World Scenario
0.05 Million
with Hong Kong
0.095 million
donors
with INDIA

10. Bone Marrow Donors Worldwide
75 stem cell donor registries from 53 countries
53 cord blood registries from 36 countries.
The current number of donors and cord blood units in the BMDW database is:
27,625,917 (26,945,567 donors and 680,350 CBU's))
Updated 09th January 2016

13. Distribution of stem cell donors

15. Transplants in India
Institution Autologous
Allogenic-
Related
Allogenic
Unrelated Total
C MC, Vellore 117 522 0 639
TMH, Mumbai 90 178 0 268
AIIMS, New Delhi 144 66 0 210
Apollo Hospital, Chennai 0 159
Jaslok Hospital, Mumbai 49 19 0 70
R&R, New Delhi 26 37 0 63
Sahayadri Hospital, Pune 7 59 0 66
GCRI, Ahmedabad 32 0 0 32
SGPGIMS, Lucknow 0 25
Kidwai Memorial Hospital,
Bangalore
3 0 0 3
15
Stem cell donor Registry
“Stem Cell transplantation in India ” (2008) doi:
10.1038/bmt2008.124 CMC Vellore By M Chandy.

16. Matched Unrelated Donor Transplant
(MUD Transplant)
Gift of Life

17. Patient
Services
Donor
Recruitment
Pillars of Stem cell registry