Smdf är medlemmar i World Duchenne organization och får på sätt tillgång till olika projekt och studier. BIND fokusera på hjärnan inom Duchenne och söker fram till den 26 januari personer som vill svara på ett frågeformulär. Läs mer nedan.
As WDO, we are partners in a EU funded project called BIND ( https://bindproject.eu ). This is the largest project ever about brain involvement in Duchenne and an amazing opportunity for our organizations and families to contribute to this type of research. One goal of this project is to assess how common and serious brain-related issues are in Duchenne and Becker muscular dystrophy. As part of the research, we are conducting a questionnaire in order to gather information to help us understand these conditions, and identify areas that need more attention to improve patient care.
For this reason, we ask you to share this questionnaire with your DMD/BMD families: your participation is essential! Our goal is to receive, if feasible, around 100 completed questionnaires per member organization.
Why this questionnaire?
• We want to know how often and how serious brain problems are for people living with DMD/BMD
• Another goal is to learn more about the treatments and support people get for these issues
• Lastly, we want to figure out signs of mental health problems to help make things better for these patients
This short questionnaire takes about 5-10 minutes to complete and is available in various languages that you can find on the right side in the upper section:
English, Arabic, Czech, Brazilian Portuguese, Dutch, French, Greek, Hindi, Italian and Spanish.
We kindly ask you to reply by January 26.
Please, do not share this survey on open channels as we wish to maintain a high quality of responses.
If you should have any question please send an email to firstname.lastname@example.org