Nigeria Sickle cell disease registry - point care health initiative
Sickle-cell anemia is a blood related disorder that affects the haemoglobin molecule, and causes the entire blood cell to change shape under stressed conditions. In sickle cell anaemia, the haemoglobin molecule is defective. After haemoglobin molecules give up their oxygen, some may cluster together and form long, rod-like structures which become stiff and assume sickle shape.
Prevalence:
Sickle cell anemia affects millions throughout the world. It is particularly common among people whose ancestors come from Sub-Saharan Africa, South America, Cuba, Central America, Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy. In the Unites States, it affects around 72,000 people, most of whose ancestors come from Africa. The disease occurs in about 1 in every 500 African-American births and 1 in every 1000 to 1400 Hispanic-American births. About 2 million Americans, or 1 in 12 African Americans, carry the sickle cell allele.
The sickle-cell trait is now known to be widespread, reaching its highest prevalence in parts of Africa as well as among people with origins in equatorial Africa, the Mediterranean basin and Saudi Arabia. In Africa, the highest prevalence of sickle-cell trait occurs between latitudes 15° North and 20° South, ranging between 10% and 40% of the population in some areas. Almost 300,000 children are born with a form of sickle cell disease every year, mostly in sub-Sarahan Africa but also in other countries such as the West Indies, South Asia and in people of African origin elsewhere in the world.
In countries such as Cameroon, Republic of Congo, Gabon, Ghana and Nigeria, the prevalence is between 20% and 30% while in some parts of Uganda it is as high as 45%.
Sickle Cell Disease (SCD) has major social and economic implications for the affected child as well as the family. Recurrent sickle-cell crises interfere with the patient’s life, especially with regard to education, work and psychosocial development.
Linus Pauling and colleagues were the first, in 1949, to demonstrate that sickle-cell disease occurs as a result of an abnormality in the haemoglobin molecule. This was the first time a genetic disease was linked to a mutation of a specific protein, a milestone in the history of molecular biology, and it was published in their paper "Sickle Cell Anemia, a Molecular Disease". Source: Wikipedia
The only cure for SCD is bone marrow or stem cell transplant.
For more information:
Sickle Cell Foundation Nigeria- http://www.sicklecellfoundation.com/
WHO Africa - http://www.afro.who.int/en/clusters-a-programmes/dpc/non-communicable-diseases-managementndm/programme-components/sickle-cell-disease.html
Why a registry?
WHO Africa has recommended the creation or strengthening of national sickle-cell disease control programmes for prevention and control of noncommunicable diseases in affected countries. The essential areas to be addressed are: advocacy; prevention and counseling; early detection and treatment; data collection, surveillance and research; and community education and partnerships.
Surveillance and research are also noted as important components of the programme. The registry initiative is aimed at collecting and generating information which would be disseminated and used as evidence in policy-making as well as in day-to-day decision-making in the management of the programme. It will also help to study the natural history of the disease and its effects on clinical manifestations and transmission of malaria.
Call for partners and support. We are looking for people and organisations to join this effort so that we can build and maintain an on-line Sickle Cell Disease registry in W.Africa. Contact us to learn more about this initiative.
Press Release announcing the partnership with Sickle Cell Foundation Nigeria to set-up the first multi-centre Registry in Nigeria.
Collaboration Partners: Sickle Cell Foundation Nigeria