The Muscular Dystrophy Campaign Nigeria (TMDCN) is proud to announce that Nigeria’s patient registry for muscular dystrophy and other neuromuscular conditions is now an official member of the TREAT-NMD Global Registry Network.
This is a significant milestone for Nigeria’s neuromuscular community. The TREAT-NMD Global Registry Network brings together patient registries from around the world to support research, improve healthcare planning, facilitate clinical trials, and accelerate the development of new therapies for neuromuscular diseases.
What is a Patient Registry?
A patient registry is a secure database that collects important information about people living with muscular dystrophy and other neuromuscular conditions. The information helps researchers, healthcare professionals, and patient organisations better understand these conditions, monitor disease patterns, identify gaps in care, and support the development of improved treatments. Patient registries play a vital role in advancing research and ensuring that the experiences of people living with neuromuscular conditions are represented in national and international studies.
Why Join the Registry?
By joining the registry, you will help:
- Improve understanding of muscular dystrophy and other neuromuscular conditions in Nigeria.
- Strengthen advocacy for better healthcare services and policies. – Support national and international research.
- Enable eligible individuals to be informed about relevant research studies and clinical trial opportunities.
- Contribute to the development of future treatments for neuromuscular diseases.
While joining the registry does not guarantee access to clinical trials or treatments, it helps ensure that Nigerians living with neuromuscular conditions are represented in global research efforts.
Your Information is Protected
Protecting your privacy is a priority. All information submitted to the registry is stored securely and managed in accordance with applicable data protection standards. TMDCN retains ownership and control of the Nigerian registry, and access to patient information is strictly limited to authorised personnel.
Be Part of Nigeria’s Neuromuscular Future
The success of the registry depends on the participation of individuals and families affected by muscular dystrophy and other neuromuscular conditions.
If you are living with muscular dystrophy or another neuromuscular condition, or you are the parent or caregiver of someone affected, we encourage you to join the registry. Every registration helps strengthen research, improve healthcare planning, and create better opportunities for current and future generations.
To learn more or register, please contact The Muscular Dystrophy Campaign Nigeria: Phone: +234 8114 555504 or +234 803 490 8346 Email: info@musculardystrophynigeria.org
The Muscular Dystrophy Campaign Nigeria (MDCN) is a registered charity in Nigeria set up to create awareness and reach Nigerian audience, educating people about Muscular Dystrophy (MD)