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/
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/
Under the age of 7 years old
Do not have a diagnosis of an inflammatory myopathy
Adults and children living with an idiopathic inflammatory myopathy recruited through self-referral (prompted by clinic notices/ patient organization newsletters / /advocacy communities / social media / internet searches ) to provide perspectives on research priorities.
Cohort
Cross-sectional
No intervention - qualitative and mixed methods investigations
Other interventionNo Intervention
Patient-voiced research priority topics
Number and distribution of coded priority domains identified from data collection that has been stratified by disease type, through thematic analysis (codebook refined iteratively) with subsequent assigned degree of importance and ranked priority.
Click on the lead sponsor to view all of their trials.
Myositis International Health & Research Collaborative Alliance Foundation
Lead sponsor
MIHRA Patient Advisory
Collaborator
Myositis Australia
Collaborator
CureJM
Collaborator
The Myositis Association
Collaborator
The Dutch Myositis Association
Collaborator
The Swedish Myositis Association
Collaborator
Myositis UK
Collaborator
The German Myositis Association
Collaborator
CARRA - Childhood Arthritis & Rheumatology Research Alliance
Collaborator
PReS - Paediatric Rheumatology European Society
Collaborator
