We are glad you have found us!
Perhaps you're a parent of a child with Congenital Myotonic Dystrophy, a grandparent, a relative or friend. Maybe you are a professional, researching the condition, or perhaps you are still unsure whether your child has CMMD - whomever you are, we are happy to have you join our CMMD family.
This is a group for YOU - so all your suggestions and comments are welcome!
Please take time to have a good look at our site, and if you have any questions, ideas, information, or just want to say hello - please do feel free to email us!
PREFER is looking for volunteers living with myotonic dystrophy or mitochondrial disease, including carers.
(This is a patient preference study, not a clinical/invasive trial)
Emma-Jayne from Cure DM CIC is delighted to be consulting with the Prefer project, and to announce the dates for the first set of Focus Groups (approx 1.5hours of your time)
If you are able to take part in one of these groups, please do – this is an important step to having our voices heard as patients and patient representatives, and to shape the future of studies, trials and treatments. If you feel you can’t take part in this step, please do contact Cecilia as there may be other ways you can help as the study moves forward. (Please mention Cure DM when you make contact)
As part of the IMI PREFER project, Newcastle University is to conduct focus groups for people with myotonic dystrophy type 1 or mitochondrial disease, as well as their caregivers (including caregivers of children with Juvenile/Congenital onset DM1).
We want to know what people with these conditions think about different treatments (real treatments and hypothetical ones) and what trade-offs they are willing to make.
A trade-off is the act of balancing a negative against a positive, for example the side-effects or risk of a treatment against the benefits.
This sort of information will help pharmaceutical companies to design more patient-centric treatments and clinical trials. So your input into this study is really valuable for shaping future research.
The focus groups will be about 1.5 hours long and will take place on:
· Friday 15th March, London
· Saturday 30th March – Nottingham
· Saturday 6 April - Newcastle (In conjunction with MDUK research and information day – Cure DM Pete and Emma will be here)
£15 voucher will be given as a thank-you for taking part.
If you’re interested in taking part in this study on one of these dates, please get in touch with Dr Cecilia Jimenez Moreno at:
or by calling 01912083105
You can read more about the PREFER STUDY, here on the MDUK website
If you feel you would like to take part and support the Prefer project, but are unable to attend these meetings OR you are an affected patient with symptoms before the age of 20 – Please contact Cecilia, as you may be able to help on other parts of the study.