Welcome to the UK Myotonic Dystrophy (DM) Patient Registry

Please refer to the Patient User Guide for detailed step-by-step instructions on using the platform.

Your Registry Profile

Please complete your Patient Questionnaire and Medical Questionnaire once a year to share ongoing updates about your health and wellbeing. You can find these in the ‘QUESTIONNAIRES’ section of the left menu.

You can access your personal details by selecting 'ACCOUNT' under your name at the top of this page. Here you can:

Select or invite your doctor
Update your contact details
Add a helper
View your consent form
Change your password

Linked Patients

If you have any other patients linked to your account (e.g., a child, or an adult who has nominated you as their helper), you can select their name under ‘SWITCH USER’ in your top menu to view their patient dashboard instead of your own.

Please help to enter their responses to their Patient Questionnaire and Medical Questionnaire too; you can find these in the ‘QUESTIONNAIRES’ section of the linked patient’s dashboard. You can also update their personal details, link clinicians or helpers, and provide a status update for a linked patient in their ‘ACCOUNT’ settings.

Please contact the registry team if you have any questions or technical issues with any part of the registry.

The JWMDRC Patient Registries Team are grateful for the donations received from Arrowhead Pharmaceuticals, AskBio, PepGen and Roche to support development of this registry platform. Industry do not receive any access to the system or data in return for this contribution, which is purely philanthropic in nature.