MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)
Recruiting
Observational Study
IBM
IIM
Myositis
Inflammatory Myopathy
Dermatomyositis
Dermatomyositis, Juvenile
Anti-synthetase Syndrome
Immune-Mediated Necrotizing Myopathy
Polymyositis
Inclusion Body Myositis
Juvenile Myositis
Juvenile Dermatomyositis
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 7 and older
- Sex
- Any
- Study type
- Observational
- Participants needed
- 700 (estimated)
- Sponsor
- Myositis International Health & Research Collaborative Alliance Foundation · Other
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About This Trial
Myositis diseases are each rare diseases. As in other rare diseases, people living with myositis diseases face physical and psychosocial challenges that may not be recognized in current research priorities. The PRISMS study is a global investigation that collects patient perspectives through (mostly online) methods of open-ended questions, community forums and survey to identify the most pressing …
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Ability to provide informed consent
* Have a clinician diagnosis of an idiopathic inflammatory myopathy or be a care partner or parent of a person living with an idiopathic inflammatory myopathy.
* Participants who may have signed up through the MIHRA Patient Contact Registry …
Contacts