Multinational CASiRe - Will Sickle Cell Disease Clinicians & Trials Consider Diverse Populations?

Renowned expert, Dr. Andrew Campbell, Director of the CASiRe Consortium, provides an update on an international study of nearly 900 sickle cell disease patients from Ghana, Italy, United Kingdom and United States. The first of its kind, the study led by Dr. Campbell aims to understand the different phenotypes of SCD, comparing clinical profiles of SCD patients living around the world.

clinical trials, racial ethnicity, diverse populations, Jamaica, Subsaharan Africa, Casire International Cohort, Ghana, Italy, UK, US, Sickle Cell Disease, Dr. Andrew Campbell

About this expert

Andrew Campbell, MD

Director, Comprehensive Sickle Cell Program

Children’s National Health System


Director of the Consortium for the Advancement of Sickle Cell Disease Research (CASiRe)

Transcript

Andrew Campbell:
It's a summary of racial background and ethnicity of international cohort of sickle cell disease (SCD) patients from Ghana, Italy, United Kingdom and the United States. We discovered that Europe, United Kingdom and Italy's racial and ethnicity backgrounds of patients largely were from subsaharan Africa. Ghana and Nigeria were the two leading countries that represented the countries of origin of sickle cell patients in Italy.

Andrew Campbell:
In the United States patients from Jamaica, Nigeria and Ghana represented the largest non-US population of sickle cell disease based on geographic origin. And the rest of the Caribbean also represented the largest non-African-American population of sickle cell disease in the United States. Ghana had a very similar country of origin as it relates to the patient and the parents. Over 95% of the patients were from African mainland and 95% were from Ghana and the other 5% were from countries like Liberia, Togo, and Nigeria.

Andrew Campbell:
We also found out the racial backgrounds were mostly -- largely -- Black or patients of African decent. Well over 90% of the population in the United Kingdom and also in the United States and in Ghana. However in Italy, close to 20% of the patients' racial backgrounds were Caucasian, which is something that a lot of people don't embrace because sickle cell disease is largely in African-decent population. Sickle cell disease is within what we call the African Diaspora, but it happens also in India and also the Middle East. There's large populations in those regions of the world.

Andrew Campbell:
So our study hopes to inform clinicians and key stakeholders to consider the racial and ethnicity backgrounds in patients with sickle cell disease when designing clinical trials. When thinking about clinical treatments of patients with SCD, there may not only be genetic differences in the disease manifestations based on ethnic backgrounds and racial backgrounds, but that there may be cultural and environmental differences based on these diverse backgrounds in our cohort.

 

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