Jo Bullivant is the Registry Curator for the Myotubular and Centronuclear Myopathy Patient Registry. Below Jo writes about the latest release of the registry, why everyone diagnosed with centronuclear and myotubular myopathy should register and future plans.
If you were able to attend the fantastic European Family Conference in Frankfurt this year, you may have already met me and heard the exciting news about the latest release of the Myotubular and Centronuclear Myopathy Patient Registry.
The Myotubular and Centronuclear Myopathy Patient Registry is an international patient database specific to this group of conditions. It was started in 2013 by our friends at the Myotubular Trust and recently they joined forces with our Registries Team here at Newcastle University, to take the project to the next level.
The registry currently has 156 members from across the globe; consisting of 126 patients and 30 female carriers. 11 of these are new registrations since we launched at the conference and of course we would love to see it continue to grow.
Why join the registry
The main purpose of the Myotubular and Centronuclear Myopathy Patient Registry is to make it easier to recruit patients for clinical trials. It does this by helping to identify suitable patients for particular trials and by contacting and informing them quickly when there is a trial they might be interested in.
The very existence of the registry can even encourage new research into these conditions, because researchers are made aware that there are already a number of patients who would be interested and easily contactable. This is why it’s important to get as many registrations as we can.
The registry can also be used to inform patients about new treatments that might be relevant to them, to provide scientists with important information about the prevalence and course of the conditions and to give doctors up-to-date information on managing the conditions; helping them to deliver better standards of care for their patients.
The registry data is managed independently here at the John Walton Muscular Dystrophy Research Centre at Newcastle University in the UK. This means it is not linked with any patient organisations or other databases and it is protected under the Data Protection Act 1998. It gets encrypted and stored on a secure server and if we publish or share any data, all personal identifiable information is removed.
What’s new about the registry
Now open for new registrations
Registrations are now being accepted from patients and from parents or guardians of patients.
More control over your own data
New patients registering will get a password protected account so that they can log back in to update or check their information at any time (if you have already registered on the old system, a username and password will be generated and sent to your email address).
No need to print large patient information documents, or sign consent forms by hand and send back by post. Everything is online.
Don’t have all the information to hand straight away?
No problem, just save your details and complete the rest when you’re ready.
What’s coming next
- Opening soon for new registrations from female carriers of x-linked myotubular myopathy (XLMTM)
- Online consent and registry questions will be available in English, German, French, Italian or Spanish
- Option for your doctor or specialist to check or upload information on your behalf
You can read more about the Registry and join now by visiting the registry website.
If you have any questions or comments, please feel free to send me an email at firstname.lastname@example.org.