Registry and Natural History Study for Progressive Myoclonus Epilepsy Type 1 (EPM1)
Recruiting
Observational Study
Progressive Myoclonus Epilepsy Type 1
EPM1
CSTB-related Disease
Myoclonus Epilepsies, Progressive
Unverricht-Lundborg Disease
Progressive Epilepsy and/or Ataxia With Myoclonus as a Major Feature
PME
Progressive Myoclonus-Epilepsies
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 200 (estimated)
- Sponsor
- Boston Children's Hospital · Other
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About This Trial
The Registry and Natural History Study for Progressive Myoclonus Epilepsy Type 1 (EPM1) is focused on gathering longitudinal clinical data as well as biological samples (blood and/or urine) from male and female patients, of all ages, who have a molecular diagnosis of EPM1or CSTB-null-related disease. Currently, there are no therapies that halt disease progression in any CSTB-related diseases, high…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Molecular diagnosis of EPM1-related disease
* Access to web-based communication, including video-teleconference
* Permanent address in the United States
Exclusion Criteria:
* Not having such a diagnosis of EPM1-related disease.
Contacts