Sickle Cell Disease Initiative

The goal of this initiative is to provide people with Sickle Cell Disease an early detection of renal complications through a non-evasive, predictive, and prognostic biomarker. Through this early detection and subsequent early treatments, there could be positive impacts on the symptoms as well as overall life expectancies.



Sickle cell disease (SCD) is a group of inherited red blood cell disorders. SCD effects almost 5 million people globally, with an estimated patient population of 100,000 in the U.S. alone. This disease severely effects the overall health of the patients, starting at a very young age and reduces life span, in severe cases by 20-30 years. SCD is a multi-organ disease, with kidneys being one of the most affected areas. This initiative is a collaboration of prestigious global organizations to identify urinary biomarkers that can be used to diagnose kidney disease in SCD patients at an early stage. This early detection, through a novel urinary dipstick test, and subsequent earlier treatment could have a positive impact on the symptoms as well as prolong life. This screening process could be easily applied worldwide in areas affected by SCD


Medical Conditions Associated with Sickle Cell Disease:

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. People who have sickle cell disease have an abnormal protein in their red blood cells. In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. The disease is hereditary and, therefore, runs in families.


Early signs and symptoms of sickle cell disease include swelling of the hands and feet, jaundice, and symptoms of anemia, including fatigue or extreme tiredness. Over time, sickle cell disease can lead to complications such as infections, delayed growth, and episodes of pain, called pain crises. Most children who have sickle cell disease are pain-free between crises, but adolescents and adults may also suffer with chronic, ongoing pain.


Sickle cell disease is a multi-organ disease and can affect a variety of major organs, including the kidneys that can lead to poor quality of life in general. (see

“The kidney is an organ of considerable impact on the clinical course of sickle cell patients.” The hope is “…to develop the basis for designing and implementing effective preventive interventions for renal complications in sickle cell patients. These researchers also seek to inform clinical practice, education and counseling guidelines.” (Renal Function in Children Suffering from Sickle Cell Disease: Challenge of Early Detection in Highly Resource-Scarce Settings,


Early diagnosis and regular medical care to prevent complications also contribute to improved well-being. Sickle cell disease is a life-long illness. The severity of the disease varies widely from person to person. Bone marrow transplant is currently the only cure for SCD. This is prohibitively expensive for many people. Moreover, the preconditioning treatment for transplant results in severe immunosuppression leading to increased susceptibility to infections. Thus, in resource-limited settings, where the majority of people with SCD live, transplant is not an advisable option. The best approach to management of SCD is early detection of complications and, therefore, the need for non-invasive predictive and prognostic biomarkers.


Global Prevalence:


As of 2015, about 4.4 million people have sickle cell disease, while an additional 43 million have the sickle cell trait. About 80% of sickle cell disease cases are believed to occur in Sub-Saharan Africa. It is particularly common among people whose ancestors come from Sub-Saharan Africa, South America, Cuba, Central America, Saudi Arabia, India, Mediterranean countries (Turkey and Greece), and it is recently found in UK, France, and Italy.



80% of sickle cell cases occur in Africa. A recent WHO report estimated that around 2% of newborns in Nigeria were affected by sickle cell anemia, giving a total of 150,000 affected children born every year in Nigeria alone. The carrier frequency ranges between 10% and 40% across equatorial Africa, decreasing to 1–2% on the north African coast and <1% in South Africa.


United States

The number of people with the disease in the United States is approximately 1 in 3,500, mostly affecting Americans of sub-Saharan African descent, according to the National Institutes of Health. In the United States, about one out of 500 African-American children and one in every 36,000 Hispanic-American children have sickle cell anemia. It is estimated that sickle cell disease affects 90,000 Americans.


Middle East

In Saudi Arabia, about 4.2% of the population carry the sickle cell trait and 0.26% have SCD. The highest prevalence is in the Eastern province where approximately 17% of the population carry the gene and 1.2% have SCD.


India and Nepal

Sickle cell disease is common in ethnic groups of central India which share a genetic linkage with African communities, where the prevalence has ranged from 9.4 to 22.2% in endemic areas of Madhya Pradesh, Rajasthan and Chhattisgarh. It is also endemic among Tharu people of Nepal and India.

Caribbean Islands

In Jamaica, 10% of the population carries the sickle cell gene, making it the most prevalent genetic disorder in the country. (from a World Health Organization report)

For more information, please contact:

Rick Flath, President, ILSC:

© ILSC 2018