Research is essential to improving our understanding of muscular dystrophy and other neuromuscular conditions in Nigeria.

At TMDCN, we believe that meaningful research should be informed by the realities of people living with these conditions and should contribute to improving knowledge, healthcare and support.

Our Research & Clinical Collaboration Programme provides a platform for collaboration between TMDCN, researchers, healthcare professionals, academic institutions, healthcare facilities and other relevant partners.

Our Focus

We support and facilitate opportunities for research and collaboration in areas that can contribute to better outcomes for people living with muscular dystrophy and related neuromuscular conditions.

Areas of interest may include:

• Diagnosis and diagnostic pathways
• Delayed or missed diagnosis
• Access to healthcare and specialist services
• Rehabilitation and physiotherapy
• Respiratory and cardiac care
• Quality of life and lived experience
• Disability and social inclusion
• Healthcare professional knowledge and education
• Patient and family support
• Epidemiology and disease burden
• Development of appropriate diagnostic approaches
• Access to treatment and supportive care
• Patient registry and health data
• Clinical research and research readiness

Research With People and Communities at the Centre

People living with muscular dystrophy should not simply be subjects of research. Their experiences and perspectives can help shape research questions and priorities.

TMDCN seeks to promote meaningful involvement of affected individuals and families in research where appropriate, helping researchers better understand the practical challenges faced by the community.

Our Role in Research Collaboration

Depending on the project, TMDCN may support research through:

• Community engagement
• Connecting researchers with people and families affected by muscular dystrophy
• Supporting awareness and recruitment activities where appropriate
• Sharing knowledge about the lived experience of muscular dystrophy
• Facilitating connections with relevant healthcare professionals or institutions
• Supporting patient and public involvement
• Contributing to research dissemination and awareness
• Supporting registry-related research opportunities
• Identifying areas of unmet need that may benefit from further investigation

All research activities involving participants should follow appropriate ethical, consent, confidentiality and data protection requirements.

Clinical Collaboration

Improving care requires collaboration across different areas of healthcare.

TMDCN welcomes opportunities to collaborate with healthcare professionals, hospitals, rehabilitation providers, academic institutions and other organisations working to improve understanding and care for people affected by muscular dystrophy.

Clinical collaboration may include educational initiatives, referral pathways, service development, research projects and other appropriate activities.

Our Research Partnerships

TMDCN has engaged with academic, clinical and research partners in Nigeria and internationally on initiatives relating to muscular dystrophy and neuromuscular conditions.

We are particularly interested in collaborations that address the challenges of diagnosis, access to care, research capacity, the development of appropriate approaches for low-resource settings, and the development or availability of affordable treatments and therapeutic options for patients who may otherwise be unable to afford them.

Partner With Us

Are you a researcher, healthcare professional, academic institution or organisation interested in collaborating with TMDCN?

We would welcome conversations about research and clinical collaboration opportunities that align with our mission and benefit people affected by muscular dystrophy.

Discuss a Research Collaboration, Contact TMDCN

Research With Purpose

Our goal is simple:

More knowledge. Better understanding. Stronger collaboration. Improved outcomes.

Together, we can help build a stronger evidence base for muscular dystrophy in Nigeria and ensure that the experiences and needs of affected individuals and families are represented in research and healthcare development.