Digital case report forms
Enrolment, follow-up visits, echocardiography findings, NYHA class and risk level, captured in a structured form rather than free text, so the data can actually be analysed later.
Rheumatic heart disease · Kenya
The Moyo Registry is Kenya’s first prospective, multi‑tier registry dedicated to rheumatic heart disease (RHD) and acute rheumatic fever (ARF). Built to capture real‑time patient data across hospitals and communities, it empowers clinicians, researchers, and policymakers with evidence to improve diagnosis, treatment, and long‑term outcomes. By integrating digital case report forms, adherence tracking, and systemic effects monitoring, the registry provides a comprehensive view of disease burden while supporting innovations in patient care, equity, and access. Its vision is to transform how RHD is understood and managed in Africa, ensuring that every patient’s journey contributes to better science and stronger health systems.
01 The problem
Rheumatic heart disease begins with something ordinary: an untreated sore throat. A Group A streptococcal infection triggers an immune response that, in some children, turns on the heart itself — acute rheumatic fever. Repeated episodes scar the heart valves permanently. By the time a child is breathless climbing a hill, the damage is decades old and often surgical.
It is a disease of missed opportunities rather than of medical mystery. Every step of the chain below can be interrupted, and in high-income countries it largely has been. In sub-Saharan Africa, which carries the world’s highest prevalence, it is still one of the leading causes of cardiovascular death in children and young adults, and it presents earlier and more aggressively here than in Europe or North America.
What is missing is rarely the medicine. Benzathine penicillin given monthly stops progression, and it is one of the cheapest drugs in the world. What is missing is the thread that connects a child to it: a record that follows them between the clinic and the community, a way of knowing who has missed an injection this month, and evidence solid enough to argue for supply, transport, and staffing.
Published cohorts have found that patients averaging under 80% adherence to their penicillin die at roughly three times the rate of those who keep up — a gap made of transport money, stock outs, and appointments nobody chased.
02 The registry
Multi-tier means the same patient is followed at every level they are actually seen — referral hospital, county clinic, and community health volunteer — against one registry number rather than three sets of notes that never meet.
Enrolment, follow-up visits, echocardiography findings, NYHA class and risk level, captured in a structured form rather than free text, so the data can actually be analysed later.
Every prophylaxis dose dispensed, every missed pickup, and the reason it was missed — stock out, cost, refusal — because the reason is what a programme can act on.
RHD does not stop at the heart. Renal, neurological, and haematological effects are recorded alongside the cardiac picture instead of in a separate file.
SMS reminders to the guardian’s phone when an injection is due or a pickup is missed, with the delivery outcome recorded, so a reminder that never arrived is visible.
Each patient carries a registry number as a printed code. At the desk it is scanned and the right screen opens — no searching through similar names, no second record created by mistake.
A care cascade from enrolment to adherence, risk movement over time, cost of attending, and site-by-site comparison — computed from the records, not estimated.
This is a clinical system holding identifiable information about children, and it is built that way: role-based access, per-site scoping so one clinic cannot read another’s patients, an append-only audit trail of every read and write, records that are withdrawn rather than deleted, and encrypted off-site backups. Enrolment requires recorded guardian consent, and the child’s assent, before any clinical data is entered.
03 Founders & leadership
The Moyo Registry was founded by a team of innovators and clinicians committed to advancing cardiovascular health in Africa.
Co-founder
A fifth-year medical student at the University of Nairobi, medical researcher, and healthcare innovator, she brings expertise in biomedical device prototyping, community health research, and advanced communication systems.
Co-founder
A lecturer in Molecular Cell Biology at the University of Nairobi, with a PhD in Medical Biotechnology from the University of Siena, whose research spans oncogenetics, lymphoma pathogenesis, and translational diagnostics.
Co-founder
A medical doctor with advanced training in Experimental & Translational Immunology from University College London, and clinical experience across cardiology, bone marrow transplantation, and multidisciplinary inpatient care.
Together, this team combines medical education, research, and clinical practice to deliver a registry that is both scientifically rigorous and deeply rooted in patient care.
Clinical staff at a participating site sign in with the account their administrator issued. Sites, researchers, and ministries interested in taking part or in access to aggregated data should contact the founding team.