The Stem Cell Registry Alliance has been launched! It is a collaborative effort among stem cell registries in the United Kingdom, Caribbean, and several African countries – including Kenya, Ghana, Nigeria and South Africa – to address the scarcity of black donors on stem cell registries throughout the world.
Hundreds of thousands of individuals worldwide live with blood cancers, like leukaemia, myeloma, hodgkin lymphoma, and non-hodgkin lymphoma. Every 20 minutes someone in the UK finds out they have a blood cancer. Around 2,000 people in the UK need a bone marrow (stem cell) transplant every year. This is usually their last chance of survival. In the UK, 80% of African/Caribbean individuals battling leukaemia will not find an unrelated matched donor to save their life.
For Caucasian patients, the situation is the complete opposite; Caucasian patients have a 90% chance to find the best possible match from an unrelated donor.
Why such a large disparity?
Access. One of the major impediments to matching patients of African ancestry with compatible donors is the scarcity of black donors who are registered with stem cell donor registries around the world. This gap, in turn, is driven by the steep logistical and financial hurdles involved in creating a registry, which is often enough to prevent resource-constrained countries in Africa and the Caribbean from launching their own registries.
The Stem Cell Registry Alliance (SCRA) was created to reduce the start-up costs for registries in these countries. By pooling resources amongst themselves, member registries will be able to start recruiting donors immediately, without the costs of setting up a stand-alone operation.
Orin Lewis, CEO, and co-founder of ACLT said:
“As one of the leading leukaemia charities in the UK, ACLT are excited to be a founding member of the Stem Cell Registry Alliance. By working in this collaborative way, SCRA will raise awareness to drive change regarding stem cell donation within African/Caribbean communities worldwide. It will allow ACLT to share our expertise gained over the last 21 years alongside SCRA members and feed into our belief that no patient should die, due to a matched donor not being available to them.”
“Nigeria is home to one-quarter of Africa’s population, with almost 400 distinct ethnic groups,” said Professor Ifeoma Okoye and Dr. Sunday Ocheni, co-directors of the Bone Marrow Registry in Nigeria. “The sheer size and diversity of Nigeria’s population make it an ideal location to recruit donors, but we are constantly battling a lack of funds.”
The SCRA will allow member registries to recruit and genetically type donors in their respective countries, then store the data securely on a centralized database, giving patients around the world a better chance of finding a match.
Individuals living in the UK who wish to join the stem cell register can visit www.aclt.org/donate for more information.
SCRA Members include:
ACLT (African Caribbean Leukaemia Trust) (UK)
Caribbean Bone Marrow Registry (Caribbean)
DWIB (Danny Whyte & Ivor Burford) (UK & Ghana)
Bone Marrow Registry in Nigeria (Nigeria)
The Sunflower Fund (South Africa)
KKLT (Kevin Kararwa Leukaemia Trust) (UK & Kenya)