Information for Researchers
The registry exists not only as a source of information but importantly to help facilitate and accelerate your research into DM. There are a number of ways the registry can help to do this;
- Planning research: The registry can help you identify not only the number of patients but also the location of these patients in the UK, discovering a potential cohort beyond the large neuromuscular centres. In addition we can provide de-identified aggregate data about specific aspects of the condition which can be invaluable in assessing the feasibility of a potential study.
- Recruiting for research: The registry can contact large numbers of patients who have indicated they are willing to take part in clinical research; making them aware of recruitment periods and letting them know about your research. We can target those members who best meet the eligibility criteria.
- Conducting research: The registry can be used to conduct research, through questionnaire based services, helping with analysis
If you are interested in using the registry then contact the registry team as soon as possible to discuss further how the interaction could be best used to aide your research. Early contact will ensure that all approvals are met and all costs are negotiated.
The Registry supports and encourages applications from any researcher, academic or industry, working to improve knowledge, understanding, care and treatment of DM. Research which may benefit from interactions with the registry includes but is not limited to:
- Clinical research that will improve standards of care and best practices
- Pre-clinical research that increases understanding of disease mechanism and pathology
- Epidemiological studies to better understand the prevalence and progression of the condition.
- Clinical trials of new therapies and treatments.
Any research wishing to use the registry must be submitted to the Registry Steering Committee. This board is made up of doctors, scientists and patient organisation representatives. Data will only be released after approval is given by Registry Steering Committee. It is not within the remit of the registry to provide ethical or scientific review of research but the Committee may ask to see evidence that such review has been carried out by the appropriate bodies.
The amount of information needed varies depending upon the scope of request please contact us for more information.
The UK Myotonic Dystrophy Patient Registry is supported by charitable funding from patient organisations in the United Kingdom. The registry desires to help all researchers, academic or industry to improve knowledge, understanding and treatment of the condition. As a result, the Registry charges fees on a cost-recovery basis. The Registry encourages all parties interested to contact the team regarding the interaction as early as possible. Early contact helps to facilitate project planning and delivery and may afford the opportunity to amend grant applications and update project budgets where applicable.
If you are interested in conducting research internationally then please contact TREAT-NMD (firstname.lastname@example.org). All myotonic dystrophy registries share the same core dataset allowing them to act as a single resource for information and research. TREAT-NMD is experienced in coordinating registries on global level (www.treat-nmd.org/registries).