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MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)

Recruitingn/aAges 7 Years - anyAllMyositis International Health & Research Collabor…
NCT07374107 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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 research concerns as identified by patients. Findings will be analyzed to create a patient-voiced set of research priorities that can guide the direction of research and help inform funding decisions across myositis diseases. Potential participants can express interest via https://mihrafoundation.org/mihra-programs/mihra-patient-contact-registry/

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📋 Eligibility rules (as published)
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 https://mihrafoundation.org/mihra-programs/mihra-patient-contact-registry/ Exclusion Criteria: * Under the age of 7 years old * Do not have a diagnosis of an inflammatory myopathy
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What it tests

  • No intervention - qualitative and mixed methods investigations
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Where

1 site
MIHRA Foundation - This is a GLOBAL STUDY
New Orleans, United States
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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