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Stem Cell Registry Alliance to Tackle 100K Africa Challenge

 

Launched in October 2017, Stem Cell Registry Alliance is a collaborative effort among stem cell registries in the Caribbean, United Kingdom, and Africa to recruit 100,000 new donors by 2030 (dubbed the “100K Africa Challenge”).

Millions of individuals worldwide live with blood cancers – like leukemia, myeloma, Hodgkin lymphoma, and non-Hodgkin lymphoma – and sickle-cell anemia.  In the United States, one person is diagnosed with a blood cancer every three minutes, and every nine minutes, a blood cancer patient dies. Many of these life-threatenting illnesses could be cured with a stem cell transplant.

However, for thousands of patients of African descent suffering with these diseases in the United States, the likelihood of finding a suitable donor match is less than 17%, whereas the rate soars to nearly 70% for Caucasian patients. In the UK, 80% of African/Caribbean individuals battling leukemia will not find a matched donor to save their life. In contrast, a Caucasian has a  up 90% chance of survival.

 

Why such a large disparity?

 

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 are often enough to prevent resource-constrained countries in Africa and the Caribbean from launching their own registries.

“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 Nigerian registry. “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 Stem Cell Registry Alliance (SCRA) was created to reduce the start-up and operational costs for registries in developing countries. Starting in 2018, members of the SCRA will recruit donors across Africa and store the HLA data in The Sunflower Registry – the first ever pan-African donor registry – which has just been recognized as a professional member of the World Marrow Donor Association.

By pooling their resources, SCRA member registries seek to create economies of scale, reduce barriers for new African registries, and enable research into HLA phenotype distributions across Africa, which in turn will improve search algorithms for patients of African descent and improve their odds of finding a matching donor.

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.”

 

 

 

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