SPARCo
Strengthening Capacity for Clinical Care Research and Training in Sickle Cell Disease (SCRT)
Sicklecell awareness | Research | Management
About us
We are here To improve health outcomes of individuals with Sickle Cell Disease (SCD) in Uganda through implementation of evidence-based interventions.
Sub-Saharan Africa bears the highest burden of sickle cell disease (SCD) globally with Nigeria, Democratic Republic of Congo, Tanzania, Uganda being the most affected countries.
Uganda reports approximately 20,000 SCD births annually, constituting 6.67% of reported global SCD births. Despite this, there is a paucity of comprehensive data on SCD from the African continent. SCD registries offer a promising avenue for conducting prospective studies, elucidating disease severity patterns, and evaluating the intricate interplay of social, environmental, and genetic factors.
This paper describes the establishment of the Sickle Pan Africa Research Consortium (SPARCo) Uganda registry, encompassing its design, development, data collection, and key insights learned, aligning with collaborative efforts in Nigeria, Tanzania, and Ghana SPARCo registries.
200+
Patients enrolled to the registry
The registry supports clinical care, research, and reporting both locally and globally.
80+
Professionals trained
Delivering expert care, precision every day with passion to people with sickle cell.
50+
Rehabilitation & Care Homes
Strategic partnerships established with 50+ institutions to strengthen service delivery.
10+
Publications & workshops
Engagements have been delivered to advance research and collaboration.
Core Goals
Patient Registry
To develop a centralized, electronic, patient-consented haemoglobinopathy registry at Mulago National Referral Sickle Cell Clinic.
Outcomes
Cocktail makeup / Daytime makeup / Evening makeup / Special occasions’ makeup
Manicure
To improve SCD patient outcomes in Uganda by establishing regional SCD standards of care in three priority areas:
– Health maintenance and preventive chemotherapy
– Screening for complications
– Management of acute complications
SCD Research
To advance SCD-related research by conducting cohort studies and implementation science studies on patients enrolled in the SCD registry.
Our philosophy
Values that guide us
Capacity Building in Research and Training
We are committed to strengthening local expertise by supporting Master’s students through funding for sickle cell–related research that advances knowledge and improves patient care.
Advancing Doctoral Research for Community Impact
We support PhD scholars conducting high-quality sickle cell research that generates evidence-based solutions and delivers measurable impact to communities.
Knowledge Generation and Dissemination
We promote scientific publishing and knowledge sharing to ensure research findings inform policy, clinical practice, and public health strategies.
Training Trainers and Agents of Change
We invest in developing trainers, healthcare professionals, and community champions who can lead sustainable change in sickle cell prevention, care, and advocacy.
Dr. Rosemary Byanyima
“As policymakers, the Government remains committed to supporting the SPARCo Project to strengthen sickle cell care and improve the lives of patients across Uganda.”
Champion
“As a champion living with sickle cell disease, I want others to know that you can live a full and meaningful life. With proper medical care, regular follow-ups, and the support of doctors, guardians, and family, it is possible to grow, thrive, and reach your goals. Sickle cell disease does not define your future — informed care and strong support make all the difference.”
Uganda Muslim Council
“As faith leaders, we stand in solidarity with families affected by sickle cell disease and fully support the SPARCo Project in promoting compassionate care, awareness, and hope across our communities.”
@SPARCo
Let’s connect on Instagram
Let’s continue to spread awareness, fight stigma, and stand in solidarity with every individual and family affected.
