EPM1 natural history study
Part of Brain & nervous system, Genetic & congenital clinical trials.
This study will follow people with EPM1 over time to better understand the disease. It is a registry, meaning you will share information through video calls and questionnaires, with no experimental treatments involved.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You must have a confirmed genetic diagnosis of EPM1 (Progressive Myoclonus Epilepsy Type 1).
- You need a device with internet and video call ability, like a smartphone or computer.
- You must live in the United States and have a permanent address here.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
This study is creating a registry to track the health of people who have specific genetic changes that cause epilepsy and uncontrolled movements (dyskinesia). It may help researchers better understand these conditions and how they change over time.
This study looks at genetic factors in people with PSP, CBS, MSA, or similar brain conditions, and also in their family members. It involves genetic testing to learn more about these diseases and may help find new treatments.
This study follows children with Pelizaeus-Merzbacher disease (PMD) who have a specific genetic change (PLP1 duplication). It aims to learn which body measurements (“biomarkers”) and symptoms change over time, to better understand disease progression.
This study follows children and adults with genetic conditions that cause severe epilepsy and developmental delays (DEE), including those with MEF2C mutations. It aims to better understand these disorders and prepare for future clinical trials. You or your child can join in person (travel to NYC), virtually (online), or by filling out a registry.
This trial tests a new medicine called EDK060 for people with Charcot-Marie-Tooth disease type 1A (CMT1A). The study will check if the drug is safe and how the body processes it, with the goal of finding better treatments for this condition.
This observational registry tracks symptoms, treatments, and disease changes over time in people diagnosed with myeloproliferative neoplasms (MPNs). By joining, you help doctors learn more about the condition and possibly contribute to better future care.
Hear when a new Progressive Myoclonus Epilepsy Type 1 trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.