This story first appeared in the Information Point newsletter Our World in 2017 when Jo Bullivant,the Registry Curator for the Myotubular and Centronuclear Myopathy Patient Registry wrote about the registry. You can also read about the registry in the article below.
- Myotubular and Centronuclear Myopathy Patient Registry (Accelerating the pace of research and treatment for MTM and CNM)
Being part of a patient registry, particularly for a rare disease, provides crucial data to scientists and researchers who are working to improve understanding of your condition and to develop treatments. It also means that you are more easily contactable in case there are any research studies or trials that you might be interested in or eligible for.
The MTM and CNM Patient Registry is funded by the Myotubular Trust and managed by Newcastle University as part of the TREAT-NMD Neuromuscular Network.
Numbers in the registry are building all the time. The image below shows registration numbers as they were on 24 February 2017.
For those who have already joined, here are some very important reminders.
- If you have started a registration but have not yet provided your consent or completed the online questionnaire, please do this as soon as possible.
- If you have completed your registration but have not logged in since 2 May 2017, please log in again and complete the updated consent information.
- If you have registered but have not yet provided a copy of your genetic report, please upload it into the registry so we can validate your data.
- You can go directly to the log in page at https://mtm.ccgapps.com.au/rdrf/mtm, Your username is the email address you used to register (and is case-sensitive) – if you have forgotten your password there is a link on the log-in page for you to re-set it.
For our European friends
The online registry, plus the information and consent pages, are now available in German (it will automatically detect the language setting of your browser) and other languages to follow soon are Spanish, Polish, Italian and French.
If you have any questions you are welcome to contact me at firstname.lastname@example.org. I’m always happy to help. Thank you for your interest in the registry – I look forward to hearing from you soon.
If you have not registered yet, you can find out more about the registry and join online at the Patient Registry website.