Anti-synthetase Syndrome, Dermatomyositis, Dermatomyositis, Juvenile, IBM, IIM, Immune-Mediated Necrotizing Myopathy, Inclusion Body Myositis, Inflammatory Myopathy, Juvenile Dermatomyositis, Juvenile Myositis, Myositis, Polymyositis
Conditions
Keywords
myositis, rare diseases, patient priorities, patient engagement, patient initiated, patient research partners, qualitative research, mixed methods research, research priorities
Brief summary
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/
Detailed description
This is a patient-initiated observational qualitative (largely online) study engaging people living with myositis diseases (and optionally their care partners) in mixed methods applications to elicit patient-voiced research priorities. Participants will be purposively sampled to ensure representation across myositis subtypes and key demographic/clinical characteristics. Methods include open-ended narratives, interactive focus groups and forums, rating and ranking to establish degree of importance and priorities. Results will include a structured set of patient-voiced priority topics/questions and a draft framework for downstream consensus processes and research agenda setting.
Interventions
OTHERNo intervention - qualitative and mixed methods investigations
No Intervention
Sponsors
Myositis International Health & Research Collaborative Alliance Foundation
MIHRA Patient Advisory
Myositis Australia
CureJM
The Myositis Association
The Dutch Myositis Association
The Swedish Myositis Association
Myositis UK
The German Myositis Association
CARRA - Childhood Arthritis & Rheumatology Research Alliance
PReS - Paediatric Rheumatology European Society
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
7 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Patient-voiced research priority topics | At completion of narrative, focus group forum or survey, up to 90 minute | 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. |
Countries
United States
Contacts
CONTACTLesley Ann Saketkoo, MD/MPH
CONTACTBarbara Shafranski
STUDY_CHAIRLesley Ann Saketkoo, MD, MPH
MIHRA Foundation
Outcome results
None listed