U01HL157004

Ghana-Sparco: Ghana Sickle Pan-African Research Consortium - Project Summary

Sickle Cell Disease (SCD) is a recessively inherited disorder characterized by disordered hemoglobin structure, aberrant endothelial interactions, systemic inflammation, oxidant stress, and activation of the coagulation system. These abnormalities underlie a myriad of complications including acute vaso-occlusive syndromes and a multi-system progressive chronic end-organ damage.

Sub-Saharan Africa (SSA) bears a disproportionately higher burden with an estimated 15 million of the world's 25 million SCD individuals; 75% of all babies born with SCD; and mortality rate for children under 5 range between 50%-90%. These include absence of national control programs, dearth of basic facilities to manage patients, absence of systematic screening for SCD, pervasive lack of implementation of evidence-based preventative interventions, cultural misconceptions about the genesis of the disease, and lack of governmental support.

By the sheer numbers of patients in Africa, there is a potential for large volumes of clinical information to be harvested through operational research for analyses to inform evidence-based decision-making on healthcare, as well as healthcare policies for SCD on the continent. To this end, the Sickle Pan-African Research Consortium (SPARCO) in 2017 started a registry across multiple sites in three countries: Ghana (an applicant for the current U01 grant), Nigeria, and Tanzania.

In the first phase of SPARCO, we established a collaborative site in Kumasi and enrolled 2,915 SCD patients including 1,453 from our newborn screening program into a registry, and built capacity for future research studies. In this second phase, we have added an in-country satellite site in the capital city Accra, which has well-developed clinical, training, and research programs in SCD, to form Ghana-SPARCO.

Our overarching goal is to establish a prospective cohort of 6,000 individuals living with SCD across the lifespan with a dual purpose of understanding: 1) the determinants of the protean manifestations of acute and chronic complications of SCD in a resource-limited setting, and 2) to conduct implementation research to address, surmount, and integrate the best resource-based standards of clinical care. Our vision is to establish hubs of excellence for research and care for SCD in Ghana.

We will work with the coordinating center to:
(I) Establish a harmonized patient registry to,
(II) Integrate standards of care for SCD,
(III) Conduct cohort studies focusing on an assessment of burden and predictors of neurovascular, renal, and infectious complications of SCD across the lifespan, and
(IV) Conduct implementation research studies on newborn screening, retention of adolescence in SCD clinics, and develop an implementation strategy for routine integration of preventative interventions for SCD.

Achieving these benchmarks will help establish the infrastructure to develop an SCD in SSA research network.

Kwame Nkrumah University Of Science And Technology

THE DIVISION OF BLOOD DISEASES AND RESOURCES SUPPORTS RESEARCH AND RESEARCH TRAINING ON THE PATHOPHYSIOLOGY, DIAGNOSIS, TREATMENT, AND PREVENTION OF NON-MALIGNANT BLOOD DISEASES, INCLUDING ANEMIAS, SICKLE CELL DISEASE, THALASSEMIA, LEUKOCYTE BIOLOGY, PRE-MALIGNANT PROCESSES SUCH AS MYELODYSPLASIA AND MYELOPROLIFERATIVE DISORDERS, HEMOPHILIA AND OTHER ABNORMALITIES OF HEMOSTASIS AND THROMBOSIS, AND IMMUNE DYSFUNCTION. FUNDING ENCOMPASSES A BROAD SPECTRUM OF HEMATOLOGIC INQUIRY, RANGING FROM STEM CELL BIOLOGY TO MEDICAL MANAGEMENT OF BLOOD DISEASES AND TO ASSURING THE ADEQUACY AND SAFETY OF THE NATION'S BLOOD SUPPLY. PROGRAMS ALSO SUPPORT THE DEVELOPMENT OF NOVEL CELL-BASED THERAPIES TO BRING THE EXPERTISE OF TRANSFUSION MEDICINE AND STEM CELL TECHNOLOGY TO THE REPAIR AND REGENERATION OF HUMAN TISSUES AND ORGANS. SMALL BUSINESS INNOVATION RESEARCH (SBIR) PROGRAM: TO STIMULATE TECHNOLOGICAL INNOVATION, USE SMALL BUSINESS TO MEET FEDERAL RESEARCH AND DEVELOPMENT NEEDS, FOSTER AND ENCOURAGE PARTICIPATION IN INNOVATION AND ENTREPRENEURSHIP BY SOCIALLY AND ECONOMICALLY DISADVANTAGED PERSONS, AND INCREASE PRIVATE-SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL RESEARCH AND DEVELOPMENT FUNDING. SMALL BUSINESS TECHNOLOGY TRANSFER (STTR) PROGRAM: TO STIMULATE TECHNOLOGICAL INNOVATION, FOSTER TECHNOLOGY TRANSFER THROUGH COOPERATIVE R&D BETWEEN SMALL BUSINESSES AND RESEARCH INSTITUTIONS, AND INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL R&D.

93.837 - Cardiovascular Diseases Research

National Heart Lung and Blood Institute (NHLBI) [HHS - NIH]

Ghana

Foreign

Sickle Pan-African Research Consortium Collaborative Sites (U01 Clinical Trial Optional) (RFA-HL-21-009)

Amendment Since initial award the total obligations have increased 1172% from $113,427 to $1,442,972.