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| ID | Type | Description | Link |
|---|---|---|---|
| PRISMS | Other Identifier | MIHRA Foundation |
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| Name | Class |
|---|---|
| MIHRA Patient Advisory | UNKNOWN |
| Myositis Australia | UNKNOWN |
| CureJM | UNKNOWN |
| The Myositis Association |
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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/
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Individuals living with a myositis disease | Adults and children with a clinician diagnosis of an inflammatory myopathy (and optionally caregivers/partners) will express their priorities and insights regarding regarding research priorities across myositis diseases. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| No intervention - qualitative and mixed methods investigations | Other | No Intervention |
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| Measure | Description | Time Frame |
|---|---|---|
| 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. | At completion of narrative, focus group forum or survey, up to 90 minute |
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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Lesley Ann Saketkoo, MD/MPH | Contact | 504 822 6653 | info@MiHRAfoundation.org | |
| Barbara Shafranski | Contact | 504 822 6653 | info@MIHRAfoundation.org |
| Name | Affiliation | Role |
|---|---|---|
| Lesley Ann Saketkoo, MD, MPH | MIHRA Foundation | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| MIHRA Foundation - This is a GLOBAL STUDY | Recruiting | New Orleans | Louisiana | 70130 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 38436382 | Background | Saketkoo LA, Paik JJ, Alexanderson H, Dimachkie MM, Ernste FC, Naddaf E, Shafranski B, Gupta L, Mecoli CA, Saygin D, Albayda J, Basharat P, Day JA, Valenzuela A, Bromley R, de Groot I, Edison SE, Lanis A, Lood C, Regardt M, Yi BY, Benitez AC, Chinoy H, Christopher-Stine L, Isenberg DA, Lang B, Oddis CV, van Royen A, Vencovsky J, Werth VP, Machado PM. Collaborative research in myositis-related disorders: MIHRA, a global shared community model. Clin Exp Rheumatol. 2024 Feb;42(2):207-212. doi: 10.55563/clinexprheumatol/hc1lsf. Epub 2024 Mar 4. | |
| 38488093 |
| Label | URL |
|---|---|
| How to Participate through the MIHRA Patient Contact Registry | View source |
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De-identified aggregate themes/coded domains may be shared; raw transcripts/audio will not be shared.
Data will become available immediately and remain available
Through publication and by contacting info@MIHRAfoundation.org
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| The Dutch Myositis Association | UNKNOWN |
| The Swedish Myositis Association | UNKNOWN |
| Myositis UK | UNKNOWN |
| The German Myositis Association | UNKNOWN |
| CARRA - Childhood Arthritis & Rheumatology Research Alliance | UNKNOWN |
| PReS - Paediatric Rheumatology European Society | UNKNOWN |
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| Background |
| Lanis A, Alexanderson H, Ardalan K, Edison S, Graham CD, de Groot I, Gupta L, Kim S, Knight AM, Kobert L, Livermore P, Lood C, Pilkington C, Regardt M, Rubinstein TB, Shenoi S, Turnier L, Voet NBM, Wahezi DM, Saketkoo LA. Mental health in paediatric and adult myositis-related diseases: current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group. Clin Exp Rheumatol. 2024 Feb;42(2):413-424. doi: 10.55563/clinexprheumatol/cngdfn. Epub 2024 Mar 14. |
| 37449887 | Background | Saketkoo LA, Valenzuela A, Kim S, McCann LJ, Lood C, Wahezi DM, Werth VP, Yi B, Alexanderson H, Maillard S, Pilkington C, Fligelstone K, Limbach B, Orandi AB, Regardt M, Russell AM, Davuluri S, deGroot I, Ernste F, Paik JJ, von Muhlen CA, Dimachkie MM, Machado PM, Naddaf E, Shafranski BM, Gupta L, Zulian F, Chung L; International Myositis Assessment and Clinical Studies Group and The Myositis International Research and Health Collaborative Alliance (IMACS/MIHRA) Calcinosis Scientific Interest Group. Moving forward together: collaborative landscapes of research in idiopathic inflammatory myopathies and calcinosis. Rheumatology (Oxford). 2024 May 2;63(5):1189-1191. doi: 10.1093/rheumatology/kead331. No abstract available. |
| ID | Term |
|---|---|
| D009220 | Myositis |
| D003882 | Dermatomyositis |
| D017285 | Polymyositis |
| D018979 | Myositis, Inclusion Body |
| D035583 | Rare Diseases |
| D010358 | Patient Participation |
| ID | Term |
|---|---|
| D009135 | Muscular Diseases |
| D009140 | Musculoskeletal Diseases |
| D009468 | Neuromuscular Diseases |
| D009422 | Nervous System Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D012871 | Skin Diseases |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D010342 | Patient Acceptance of Health Care |
| D000074822 | Treatment Adherence and Compliance |
| D015438 | Health Behavior |
| D001519 | Behavior |
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