Seeking Adolescents and Adults Diagnosed with Congenital Myotonic Dystrophy Type 1 (cDM1) for Interview Study
What is the purpose of the study?
To better understand the experiences of those living with cDM1, and to get feedback on questionnaires that may be used in future studies of new treatments for cDM1.
Who is eligible?
- Adolescents (12-17 years old) and adults (18+) living in the US who have received a diagnosis of cDM1
- Willing and able to participate in a 90-minute interview (web-based or telephone) in English
Other eligibility criteria may apply
What do participants need to do?
Call or email Audra Gold at RTI Health Solutions at 510-647-4310 or algold@rti.org to screen for eligibility (parent or adolescent can
contact Audra for screening)
If eligible, participate in a 90-minute interview (can be shortened, or split into multiple sessions. Parent may join adolescent, if needed)
Adult participants will
receive $125, adolescent
participants will receive
$75 and their parent will
receive $50 electronic gift
card in appreciation of
their time
Who is conducting the study
RTI Health Solutions (RTI-HS) part of a non-profit research organization
