Myotonic Dystrophy Family Registry
| Status: | Recruiting |
|---|---|
| Conditions: | Neurology, Neurology |
| Therapuetic Areas: | Neurology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 9/5/2018 |
| Start Date: | February 2013 |
| End Date: | February 2020 |
| Contact: | Molly White |
| Email: | coordinator@myotonicregistry.org |
| Phone: | 415-800-7745 |
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that
collects information on myotonic dystrophy (DM) to aid researchers in developing new,
effective treatments and help identify participants for research studies and clinical trials.
collects information on myotonic dystrophy (DM) to aid researchers in developing new,
effective treatments and help identify participants for research studies and clinical trials.
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that
collects information on myotonic dystrophy (DM) such as disease symptoms and demographic
information to aid researchers in developing new, effective treatments and help identify
participants for research studies and clinical trials.
The Registry supports trials and studies, making it easier for researchers to explore data
and identify possible trial and study participants. It is the first DM registry that gives
community members the opportunity to explore anonymous Registry data, to see what the DM
community looks like and what others with DM experience. It also provides information on the
community of people living with DM, giving researchers and other medical professionals the
opportunity to improve how they treat those affected with DM and learn more about how and why
certain treatments work and don't work.
collects information on myotonic dystrophy (DM) such as disease symptoms and demographic
information to aid researchers in developing new, effective treatments and help identify
participants for research studies and clinical trials.
The Registry supports trials and studies, making it easier for researchers to explore data
and identify possible trial and study participants. It is the first DM registry that gives
community members the opportunity to explore anonymous Registry data, to see what the DM
community looks like and what others with DM experience. It also provides information on the
community of people living with DM, giving researchers and other medical professionals the
opportunity to improve how they treat those affected with DM and learn more about how and why
certain treatments work and don't work.
Inclusion Criteria:
- Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by
clinical exam or genetic test)
Exclusion Criteria:
- Not diagnosed with DM, unaffected family members
We found this trial at
1
site
Click here to add this to my saved trials
