Muscular Dystrophy Registry Nigeria (MDRN)

Nigeria’s first national patient registry dedicated to muscular dystrophy.

The Muscular Dystrophy Registry Nigeria (MDRN) is a national initiative being established in partnership with the Neuromuscular Clinic at the University College Hospital (UCH), Ibadan, the Dotun Tejuoso Muscular Dystrophy Foundation; and Manchester Metropolitan University
(MMU), United Kingdom. Together, these partners are working to strengthen muscular dystrophy care, research, and patient support across Nigeria.

The registry aims to improve the lives of people living with muscular dystrophy by generating reliable national data that supports earlier diagnosis, better clinical care, research collaboration, and evidence-informed health policy. By bringing together patients, families, healthcare professionals, researchers, and policymakers, the registry will provide the evidence needed to improve access to quality care, advance scientific research, inform healthcare planning, and
prepare Nigeria for future clinical trials and emerging therapies.

Why The Registry Matters

Muscular dystrophy is a group of rare genetic conditions that cause progressive muscle weakness and disability. Although many families across Nigeria are affected, there is currently no national system for collecting reliable information on the number of people living with these conditions, how they are diagnosed, the care they receive, or their long-term health outcomes.

Without this information, it is difficult to plan healthcare services, advocate for improved policies, attract research investment, prepare hospitals for new therapies, or understand the true burden of muscular dystrophy in Nigeria.

The Muscular Dystrophy Registry Nigeria was created to bridge this gap by providing a secure, high-quality national database that supports better care, research, and advocacy.

Our Vision

To build a comprehensive national registry that improves the lives of people living with muscular dystrophy through better data, stronger healthcare systems, collaborative research, an informed policy.

Mission

To establish and maintain Nigeria’s first national muscular dystrophy registry, generating high-quality data that improves patient care, advances research, strengthens advocacy, and creates opportunities for equitable access to future treatments.

Objectives

1. Establish Nigeria’s first national muscular dystrophy patient registry.
2. Improve understanding of the burden of muscular dystrophy in Nigeria. Support earlier diagnosis and better clinical care.
3. Enable local and international research collaborations.
4. Inform healthcare policy and planning.
5. Prepare Nigeria for future clinical trials and emerging therapies.
6. Connect patients and families with trusted information, healthcare providers, and support services.

Conditions Included

The registry includes individuals living with various forms of muscular dystrophy, including:
1. Duchenne Muscular Dystrophy (DMD)
2. Becker Muscular Dystrophy (BMD)
3. Limb-Girdle Muscular Dystrophy (LGMD)
4. Facioscapulohumeral Muscular Dystrophy (FSHD)
5. Congenital Muscular Dystrophy (CMD)
6. Emery-Dreifuss Muscular Dystrophy (EDMD)
7. Myotonic Dystrophy
8. Other genetically confirmed muscular dystrophies

Our Approach

The registry is being developed using internationally recognised best practices for rare disease registries while adapting to the realities of healthcare delivery in Nigeria.

It will collect high-quality clinical and emographic data through ethical, secure, and patient-centred processes, creating a sustainable resource that supports healthcare improvement, scientific research, and collaboration.

Data Privacy and Confidentiality

Protecting patient information is one of our highest priorities.

All information collected through the registry will be handled with strict confidentiality and managed in accordance with applicable ethical standards and Nigerian data protection requirements. Access to identifiable information will be restricted to authorised registry personnel, and any data used for research will be appropriately governed and protected.

Participation in the registry is entirely voluntary, and informed consent will be obtained before any information is collected.

Corporate & Foundation Supporters

We sincerely thank the companies, foundations, and organizations whose financial and in-kind support helps us deliver our programmes and expand our impact.

Our Partners

The Muscular Dystrophy Registry Nigeria is built through collaboration between healthcare institutions, academic partners, patient advocacy organisations, researchers, and families affected by muscular dystrophy.

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Individual Supporters

We are grateful to the individuals whose generosity and belief in our mission continue to make a meaningful difference.

Adesayo Adewunmi, Stephanie Adewunmi, Olumuyiwa Shoyombo, Jubril Oketaolegun, Adedotun Kehinde, Femi James, Dr. Lanre Jimoh, Tunji Tejuoso, Moyo Oderinde, Segun Faloye, Moyo Oluwole, Seun Durojaiye

Leadership & Registry Team

The registry is led by a multidisciplinary team of clinicians, researchers, patient advocates, and project professionals committed to improving muscular dystrophy care in Nigeria.

Prof. Rufus O. Akinyemi

Principal Investigator

Prof. Rufus O. Akinyemi is a Professor of Neurology at the University of Ibadan and an Honorary Consultant Neurologist at University College Hospital (UCH), Ibadan. As Principal Investigator of the Muscular Dystrophy Registry Nigeria, he provides scientific and strategic leadership, overseeing the registry’s research direction, governance, and integration into clinical practice while fostering national and international research collaborations.

Dr. Joseph Yaria

Clinical Lead

Consultant Neurologist, Neuromuscular Clinic, University College Hospital (UCH), Ibadan Dr. Yaria provides clinical leadership for the registry, overseeing patient recruitment, diagnosis, clinical data collection, and integration of the registry into routine neuromuscular care

Dr.Joy Ibeh-Alejo

Co-Clinical Lead

Dr. Joy is a Consultant Paediatric Neurologist at the Neuromuscular Clinic, University College Hospital (UCH), Ibadan. As Co-Clinical Lead of the Muscular Dystrophy Registry Nigeria, she provides clinical leadership for patient recruitment, diagnosis, and data collection, while supporting the integration of the registry into routine neuromuscular care to improve outcomes for children living with muscular dystrophy.

Adedotun Tejuoso

Registry Coordinator & Community Engagement Lead

Founder, Dotun Tejuoso Muscular Dystrophy Foundation. Adedotun leads community engagement, patient advocacy, partnership development, and registry coordination. He works closely with patients, caregivers, clinicians, and partner organisations to promote participation and ensure the registry remains responsive to the needs of the muscular dystrophy community.

Dr Chris Morse

Scientific Advisor, Manchester Metropolitan University, United Kingdom

Dr. Morse provides scientific and technical guidance on registry development, governance, research methodology, and international collaboration, helping ensure the registry aligns with global best practices.

Registry Advisory Group

The registry is supported by an advisory group of clinicians, researchers, data specialists, patient representatives, and partner organisations who provide strategic, ethical, and technical guidance as the initiative grows.

Get Involved

There are many ways to support the Muscular Dystrophy Registry Nigeria.

Join the Registry

The registry welcomes everyone with a role in the muscular dystrophy community, including individuals living with any form of muscular dystrophy, parents and caregivers, adult patients, healthcare professionals, hospitals and neuromuscular clinics, researchers, and patient advocacy organisations. By bringing together patients, families, clinicians, researchers, and advocacy groups, the registry aims to strengthen collaboration, improve care, and advance research into muscular dystrophy.

Join Now

Become a Clinical Partner

Hospitals, clinics, and healthcare professionals are invited to collaborate by referring eligible patients and contributing clinical expertise.

Become a Partner

Support Our Work

Your support will help expand the registry, strengthen research, improve patient care, and create hope for families living with muscular dystrophy across Nigeria.

Together, We Can Transform Muscular Dystrophy Care in Nigeria

Every person who joins the registry contributes to a better understanding of muscular dystrophy and helps shape a future with earlier diagnosis, improved care, stronger research, and greater hope for families across Nigeria.

Together, we are building the foundation for better muscular dystrophy care in Nigeria.

Counted. Connected. Empowered

Volunteer Now

Frequently Asked Questions

Is participation voluntary?

Yes. Participation is completely voluntary.

Will my personal information be kept confidential?

Yes. Protecting participant privacy is one of our highest priorities.

Does it cost anything to join?

No. Registration is free

Can children be enrolled?

Yes. Parents or legal guardians can enrol eligible children.

Will joining the registry guarantee treatment?

No. Participation does not guarantee access to treatment. However, the registry will help improve
understanding of muscular dystrophy in Nigeria, strengthen healthcare planning, support
research, and prepare the country for future clinical opportunities.