Bone Marrow & Stem Cell Registries
Many countries around world have at least one stem cell or bone marrow registry. For eligible people, being on one of these registries is as simple as filling out a form and providing a cheek swab or blood test.
Each registry keeps the details of every person and most importantly their tissue type. The registries are all linked so there is in effect a huge worldwide registry which increases the chances of each person finding a donor even if there is not a match in the registry where they live.
The Australian Bone Marrow Donor Registry (ABMDR)
Here in Australia, we have the Australian Bone Marrow Donor Registry (ABMDR).
When a patient needs to find a donor, their doctor will first turn to the patient’s family to see if anyone is a suitable match, and if not will contact the ABMDR to search their registry. If no one registered on the ABMDR is a suitable match, a search will be carried out across the world wide registries. In fact, for 80% of Australian transplant patients, their donor is found on overseas registries, with Germany, USA, UK and Poland being the largest contributing countries.
With over 36 MILLION people registered on one of the worldwide registers you would expect that finding a match is easy, but this is not the case. The chances of you being a match is actually quite low – only 1 in 1,500 people are the special ones. We need MANY more people to sign up, which is where you come in.
Who is eligible to register?
The eligibility criteria to register varies around the world as each registry has their own rules, but no registry will accept donors if donating could be unsafe for either the donor or the patient.
Here in Australia, the ABMDR exclusion rules have been simplified due to the introduction of cheek swabs as a way of testing your tissue type. They will accept people in good health between the ages of 18 and 45, and only exclude people who have:
- been diagnosed with any of the following blood disorders – thalassaemia major, sickle cell disease, Fanconi anaemia or haemophilia
- previously had an organ or bone marrow transplant
- had a positive test for HIV or HTLV
Why is TLR focusing its recruitment on the 18-30’s?
Research has shown people in the 18-30 age range are much more likely to be chosen as younger donors generally have fewer health complications and are often more readily available to donate. Patients also tend to have better transplant outcomes with younger donors.
It costs approximately $100 to get each person tested and registered on the ABMDR, so TLR has chosen to use its funds wisely and focus on those most likely to be chosen.
Men often make better donors. Sounds a bit rude, but why is this?
Both men and women are equally encouraged to sign up to the ABMDR, however there is a focus on recruiting more men as there are currently under-represented on the ABMDR. In fact, men aged 18 – 30 currently make up only 4% of those registered on the Australian Registry.
But why are men usually chosen over men? It’s not as sexist as it sounds, it’s actually down to practicality and science.
For the most part, donating stem cells is about quantity over quality. Men are often larger than women and so can physically donate a larger volume of stem cells. Doctors also tend to choose men to avoid logistical issues that arise due to women not being able to donate while pregnant or breastfeeding. Also, women who have been pregnant can also produce antibodies that can increase the risk of Graft vs Host disease, known as GvHD. This can be very serious, and in Trace’s case, fatal. For others, it can drastically change the quality of their life after transplant. These are the factual reasons why doctors will choose men over woman.
That being said, young, healthy women who have never been pregnant can make equally great donors as men, so we encourage everyone to join the Registry.
Why is Ethnicity important?
Being selected as a donor comes down to one main factor, sharing the same tissue type as the patient. Tissue type is determined entirely by Human Leucocyte Antigens (HLA), which are protein markers found on the surface of every cell in your body. You inherit half of your HLAs from your mum and half from your dad. The best chance a patient has of finding a match is from someone who shares the patients same ethnic background.
Australia is an incredibly multicultural society, one which has been built on migrants. But the very thing which makes Australia so unique also makes is very challenging for some people to find a compatible donor.
With almost 80 percent of people currently registered on the Australian Bone Marrow Registry having a northern European background, there is a need to encourage more diversity on the register to better represent the diversity we have within Australia.
Can I donate to a friend or a family member?
When a friend or a family member is diagnosed with a disease treatable with a stem cell or bone marrow transplant, many people come forward offering to help. Sadly, the chances of you being a match for a friend are highly unlikely. In many cases the best donor is a brother or sister who share the same parents, but even then, there is only a 25% chance your sibling shares the same tissue type.
The other 75% of patients will need to rely on finding an unrelated donor, a generous stranger registered on the ABMDR or one of the other worldwide registries. If you join the ABMDR you may be matched to a patient needing a transplant anywhere in the world.
Can I donate if I’m a gay?
That’s a resounding YES, yes you can, and we are proud you can too. Anyone generous enough to register and potentially save the life of someone in need, regardless of their gender, race, religion or sexuality is welcomed to sign up. And anyone who comes up as a match will go through thorough testing to make sure donation is safe for both donor and the patient.