The donation of bone marrow requires absolute compatibility between an anonymous donor and a patient, which is very rare. Hence the importance of increasing the number of donors in France and further developing partnerships with foreign donor registers. Bone marrow transplantation is necessary in some serious blood diseases, such as leukaemia.
It is very difficult to find a compatible donor outside the immediate family circle (brothers and sisters). By way of example, the probability of finding compatibility between siblings is 1 in 4, but it is 1 in 1 million in the case of two individuals chosen at random.
The French Bone Marrow Transplant register, which lists volunteer bone marrow donors, currently registers more than 240,000 volunteers. This number is still inadequate, so it needs to be increased every year so patients can be given a greater chance of being cured.
THE FRENCH BONE MARROW TRANSPLANT REGISTER
The French Bone Marrow Transplant register, which was created in 1986, is there to help patients who need a bone marrow transplant but do not have a compatible donor among their siblings. It lists all volunteer bone marrow donors in France, which currently stands at around 200,000 people.
The French Bone Marrow Transplant register has been maintained by the Agence de la biomédecine since 2006. It is a member of the World Marrow Donor Association (WMDA), an association of 79 international registers, a total of 25 million donors in 60 countries, which issues recommendations and quality standards specific to the registers. It was the first register certified by the WMDA in May 2004, and it was re-accredited in 2009.
The French Bone Marrow Transplant register works very closely, and very effectively, with international registers. Searches are automated and potential donors are identified in less than 24 hours. The computer systems that have been implemented now allow access to 90% of registered donors worldwide. Each year, new registers are connected to the international network, known as the European Marrow Donor Information System (EMDIS).
THE ROLE OF THE AGENCE DE LA BIOMEDECINE
The Agence de la biomédecine maintains the French Bone Marrow Transplant register, the national register of volunteer donors of haematopoietic or peripheral mononuclear cells and cord blood units for patients unable to receive a transplant from family members, as well as national and international patients for whom a haematopoietic stem cell transplant not from family members is indicated.
In this framework, the Agence is responsible for searching for donors and units compatible with these patients in French and foreign registers and it coordinates the organisation of bone marrow removal and/or the transfer of units. It does this with the support of histocompatibility laboratories of the French Blood Agence and a number of teaching hospitals tasked with the HLA typing of donors, cord blood units and patients from registration through to the final selection of donors. It also relies on the international registers with which the French register is interconnected for access to all donors and cord blood units registered worldwide.
Working closely with the French Blood Agence, the Agence de la biomédecine manages the French Cord Blood Network, which includes all the French cord blood banks and the maternity hospitals where the cord blood is collected.
The Agence de la biomédecine is also responsible for devising the development policy for hematopoietic stem cell (HSC) transplantation, primarily in conjunction with the learned societies that draw up recommendations for guidelines and strategies for the provision of treatment.
It also provides monitoring, supervision and evaluation of activities and medical practices with respect to HSC. In addition, it takes part in promoting research into these activities.
Regional and national health authorities call on its expertise in this area. In this capacity, it expresses an opinion on all requests emanating from healthcare institutions wishing to carry out the collection of haematopoietic cells, whatever their origin.
The Agence also carries out year-round promotion of bone marrow donation targeting the general public.