March 18th, 2023
One of MDI’s strategic priorities is to support researchers and clinicians to carry out quality research into neuromuscular conditions. An initiative in achieving this is the development of a registry of people in Ireland with a neuromuscular condition. A registry is a database containing information about individuals who are affected by a specific condition. In rare conditions, they play an important role in supporting pathways for developing therapies.
- Identify participants for clinical trials
- Help develop care standards, to help improve the care people receive
- Support specific research questions
- Provide information for doctors and scientists to learn more about neuromuscular conditions in Ireland
- Represent a link between people with a neuromuscular condition and the research community.
We are currently working with clinicians, researchers, and people with lived experience of neuromuscular conditions on the design and delivery of this project that has potential to impact positively on the muscular dystrophy community. We have forged relationships with international organisations including Euro-NMD Registry and Treat-NMD as we work towards finalising the database.
The types of data gathered will include – clinical and genetic diagnosis details, when symptoms started, date of diagnosis, current best motor function, other related symptoms such as heart function and questions about your quality of life. We look forward to keeping you updated on the development of the Registry.
Keep on eye on our social media for exciting developments and we will have a further update in our next newsletter.
Please note that MDI shares information about neuromuscular conditions. We do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.