Stem Cell Registry

1. 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

2. History
 The concept of registries dated back to
1970, when Prof. Dr. Jon J. van Rood
proposed at the meeting of the
Deutsche,Munich to set up a file of HLA
typed volunteer blood transfusion
donors to be used for HLA matched
bone marrow transplantation
Continued…
…….

3. History
 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
Continued……….

4. History
 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”(BMDW)
 The first edition of this “yellow pages of
bone marrow donors and cord blood
units” published in 1989, had 150,000
bone marrow donors coming from 8
countries.

5. BMDW start in 1988

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. Standards of a stem cell registry defined
by WMDA
 General organisation of the registry
 Donor recruitment, consenting,
screening and testing of volunteer
donors
 Information technology and information
management
 Facilitation of search requests
 Collection, processing and transport of
HPC
 Follow-up of patient and volunteer donor
 Financial and legal liabilities

8. 0.18 million donors
with Australian
registry
World Wide
donors
Registered
1.0 million donors
with UK
5.9 million donors
with Germany
8.2 million Donors
with, USA
0. 27 million
with France
0.001 million
donors
with INDIA
As per BMDW (Bone Marrow Donor Worldwide) 2015/11/09
0.398 million
donors with
Taiwan
0.09million
with Belgium
27,144,456 Donors & cord represented by another 53 Countries.
World
Scenario
0.084 Million
with Hong Kong

9. Distribution of Stem Cell Donors
Over the Globe.

10. Pillars of Stem Cell Registry

11. Step 1: Donor recruitment
Attend counseling session
by registry counselor
Understand the
procedure
Sign the consent form

12. Step 2 : Sample collection of the donor
5ml of
donor
sample
collected
Labeled
Results of
HLA typing
stored in an
electronic
database

13. NAME OF DONOR:
UNIQUE ID NO.:
HLA CLASS-I
A
HLA typing report of donor.
Added to database created
for blood disorder patients.
You become a voluntary donor and a part
of Stem cell registry
Step 3: Creation of Database

14. When do you donate?
Patients unable to find a donor among family and
friends approach Gene Bandhu in search for a
voluntary donor.
Registry searches for a most probable match
(donor) in there data pool for stem cell transplant of
patient.
PATIENT ALLELES DONOR ALLELES
A- 04,06 A-04,06
B- 23,42 B-23,42
C- 45, 32 C-45,32
DR-18,09 DR-18 ,09
DQ- 12,01 DQ-12,01
When registry finds a suitable match for the
patient, donor gets a call from the registry.

15. The donation procedure
If you are an appropriate match for the
patient
You get a call from the
registry

16.  The doctor will give you subcutaneous
(under the skin) injections of growth
factor for four / five consecutive days to
mobilize the Stem Cells from your Bone
Marrow into the blood stream.

17.  The actual process of collecting the
stem cells involves a few hours of
your time seated in a comfortable
lounge chair

18.  A specialized machine called Apheresis
machine will simply separate and
collect the stem cells from your blood
stream.
 Collection is done via sterile single-use
needles inserted into the veins of your
arms to collect the stem cells as well as
to return other blood cells and fluid
back into your body.
 Most people recover very quickly from
this procedure and resume normal
activity within a few days.

19. Steps of Matched Unrelated
Donor (MUD) Transplant
Search
Confirmatory Typing & IDM testing
Donor Counseling
Mobilization
Harvest
Transport
PBSC Infusion & Engraftment
Patient follow-up

20. Common Registry terminology
 Collection centre
 Donor centre
 Recruitment Centre
 Extended typing
 CT
 IDM
 MUD
 TC