STEM CELLS - The Registry has made diversity a priority


Contrary to the needs for blood, where blood groups are highly similar for everyone and few in number (groups A, B, AB or O), stem cell transplants constitute a significant challenge regarding compatibility, since there are more than 15,000 genetic markers.


For a stem cell transplant to succeed, the characteristics of the transplanted cell must be as close as possible to the cells of the patient. These characteristics, known as HLA characteristics, are hereditary. Therefore, the patient’s brothers and sisters are more likely to be compatible.


Unfortunately, three out of four times, no compatible donor is found in the family and potential donors of the same origin must be sought: stem cell donor registries thus become the only hope. The problem is that over 85% of donors in the Stem Cell Registry are white (Caucasian). Caucasians thus have much better chances of finding a compatible donor than do people of Asian, Hispanic, black or First Nations origin. Indeed, First Nations people are among those who suffer the most from this situation, because contrary to the black and Hispanic populations, for example, the Public Cord Blood Bank is currently unable to make up for their under-representation in the Registry.


A study focusing exclusively on the First Nations


Héma-Québec, which has been working several years to improve the diversity of its Registry, will increase its activities with First Nations in the coming months. This will first involve building awareness about stem cell donations and then studying their HLA markers to learn how they are distributed among the different First Nations communities.


The First Nations are not only very much underrepresented in the Canadian registries (Héma-Québec and OneMatch), they are also absent from international registries.


Quebec’s Registry includes about 500 First Nations individuals (0.8%). But First Nations patients made up 3% of the people referred to the Registry this year. Results: the probabilities of meeting the needs of patients in these communities are very low. Also, no data exist on their HLA genetic profile, making research more complex because it is difficult to assess and forecast the different combinations of HLA-compatible markers.


The research and actions by Héma-Québec are thus intended to reveal the similarities and differences between the First Nations communities, to determine whether their HLA typing shows similarities with those of other populations in the world, to increase the number of First Nations stem cell donors in the Registry and, above all, to save lives!


This project, funded by the Héma-Québec Foundation and the Stem Cell Donor Registry of Héma-Québec, has been warmly received by the communities it has contacted to date. The support given by the FNQLHSSC is bringing new vigour to the efforts being made to get the message out concerning the urgent need for First Nations donors.