The TMDCN Patient Registry Programme is helping to build a reliable picture of people living with muscular dystrophy and other neuromuscular conditions in Nigeria.

For many years, limited information about the number of people affected, their diagnoses, symptoms, healthcare needs and access to care has made it difficult to plan appropriate services and advance research.

Our registry aims to help address this gap by supporting the collection of relevant information from individuals and families affected by muscular dystrophy and neuromuscular conditions.

Why a Patient Registry Matters

A patient registry can help us better understand:

• How many people are affected by muscular dystrophy and related neuromuscular conditions in Nigeria
• The different types of muscular dystrophy and neuromuscular conditions affecting individuals
• Age at diagnosis and the challenges associated with delayed diagnosis
• Healthcare and support needs
• Access to specialist care, rehabilitation and other services
• The impact of muscular dystrophy on individuals and families
• Opportunities for future research and clinical collaboration

Better information can support better healthcare planning, advocacy, research and the development of services for people living with muscular dystrophy.

Connecting Nigeria to Global Research

TMDCN is an official member of the TREAT-NMD Global Registry Network, connecting our registry work with the international neuromuscular disease research community.

Through this network, appropriately collected and governed information can contribute to a greater understanding of neuromuscular diseases and support opportunities for research, healthcare planning and the development of future treatments.

How the Programme Works

• Individuals living with muscular dystrophy or other relevant neuromuscular conditions may be invited to provide information about their condition and healthcare experiences.
• Participation involves providing relevant information and, where applicable, giving informed consent for its use in accordance with the applicable registry and data protection requirements.
• Information collected is handled responsibly and used for legitimate programme, research and healthcare-related purposes.
• Participation in the registry does not replace medical care and does not guarantee access to treatment, clinical trials or research studies.

Who Can Participate?

The programme is intended to support the registration of people living with muscular dystrophy and relevant neuromuscular conditions in Nigeria.

Parents or legally authorised representatives may be involved where appropriate, particularly when registering children or individuals who require support with consent.

Your Information Matters

Every person registered contributes to a better understanding of muscular dystrophy in Nigeria.

By helping us build reliable data, individuals and families can contribute to efforts to:

Understand → Plan → Advocate → Research → Improve Care

Get Involved

If you or a family member is living with muscular dystrophy or a relevant neuromuscular condition and would like to learn more about the Patient Registry Programme, please Contact TMDCN

Please note: Registration does not constitute a diagnosis or medical consultation. The information provided through the registry is not a substitute for professional medical advice.