[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"inclusion-body-myositis\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:inclusion-body-myositis":28},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,5,0,[8,47,112,143,188],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":16,"sex":17,"minAge":18,"maxAge":19,"enrollmentInfo":20,"targetDuration":4,"studyType":23,"phases":4,"briefSummary":24,"conditions":25,"keywords":29,"overallStatus":36,"whyStopped":4,"lastUpdateSubmitDate":37,"lastUpdatePostDateStruct":38,"startDateStruct":41,"completionDateStruct":4,"leadSponsor":43,"locationsCount":46},"100059503","adult-and-juvenile-myositis-100059503",false,"NCT00017914","Adult and Juvenile Myositis","Studies in the Natural History and Pathogenesis of Childhood-Onset and Adult-Onset Idiopathic Inflammatory Myopathies","* ELIGIBILITY CRITERIA:\n\nPatients with Myositis:\n\nInclusion Criteria:\n\nAll patients should have age range 2-100 years.\n\nAll Patients admitted to the study must satisfy at least one of the following criteria among item 1 (A or B or C) OR item 2 (A or B or C) AND item 3:\n\n1. Patient has documented evidence that he\u002Fshe meets criteria for an idiopathic inflammatory myopathy\n\n   A. Possible, probable or definite adult or juvenile polymyositis or dermatomyositis by Bohan and Peter criteria\n\n   B. Possible, probable or definite inclusion body myositis by Griggs and\u002For ENMC criteria\n\n   C. Has an idiopathic inflammatory myopathy that does not meet these criteria, including common or rarer forms of myositis such as cancer- associated, focal, orbital, eosinophilic myositis, macrophagic, proliferative, etc.\n2. Has one of the following conditions:\n\n2A. Have a disorder that is related to an idiopathic inflammatory myopathy, that may include:\n\n* Inflammatory and non-inflammatory myopathies:\n* Mimicking and related skin disorders:\n* Disorders of the complications of myositis (including interstitial lung disease, calcifying disorders, cardiomyopathies, etc.):\n* Overlapping autoimmune diseases that may be associated with myositis\n* Patients with muscle and\u002For skin inflammation and documented environmental exposures:\n* Patients with myositis or complications of myositis and suspected genetic disorders:\n* Patients with undifferentiated connective tissue disease\n* Patients with signs or symptoms of myositis (such as weakness, skin rashes, interstitial lung disease) or laboratory abnormalities (such as elevated CK or muscle biopsy with myopathic features) who do not have an established diagnosis of myositis for them to be evaluated to establish a diagnosis\n\n  3\\. Ability of patient or parent\u002Fguardian to give informed consent to all or part of the study after full information has been provided.\n\nExclusion Criteria:\n\n1. Patients \\\u003C2 years or \\>100 years will be excluded.\n2. Any conditions in which the drawing of the amount of blood required or undergoing procedures needed for the study is not deemed medically appropriate by the treating physician or the principal investigator.\n\nFor females of childbearing potential who are pregnant, they will be permitted to enroll, but would be excluded from radiographic procedures involving radiation or greater than minimal risk procedures, including obtaining biopsies.\n\nRelatives of Patients with Myositis:\n\nFor patients with at least one first-degree relative affected with IIIM, all available first-degree relatives (affected and unaffected) are eligible to participate in the genetics portion of the protocol. For patients in which two or more first degree relatives are affected with myositis, any available close relatives (affected or unaffected parents, siblings or children, as well as grandparents and grandchildren, or other close relatives, when available) are eligible to participate in the genetics portion of the protocol.\n\nInclusion criteria:\n\n1. First or more distant relative of a proband with myositis, for genetics studies.\n2. Ability of patient or parent\u002Fguardian to give informed consent to all or part of the study after full information has been provided.\n\nExclusion Criteria:\n\n1. Patients \\\u003C2 years or \\>100 years will be excluded.\n2. Any conditions in which the drawing of the amount of blood required or undergoing procedures needed for the study is not deemed medically appropriate by the treating physician or the principal investigator.\n3. Pregnancy (females of childbearing potential). Verbal confirmation they are not pregnant.\n\nHealthy Volunteers:\n\nInclusion Criteria:\n\n1. Healthy volunteer subjects for biomarker studies will be gender and age-matched (within 5 years) with a myositis patient, as reasonably close as possible.\n2. Volunteer is not related to a myositis patient who is enrolled in the study\n3. Volunteer is in good health, without a recognized systemic rheumatic disorder, autoimmune disease, immune medicated disease, or cancer, and is not taking any anti-inflammatory medicines, including nonsteroidal anti-inflammatory drugs (NSAIDS) or corticosteroids\n4. Volunteer or volunteer s parent\u002Fguardian could give assent\u002Finformed consent to all or part of the study after full information has been provided\n\nExclusion Criteria:\n\nIf Any \"Yes\" answer patient is not eligible for study\n\n1. Volunteer has undergone surgery or had a major trauma within the past 2 months\n2. Volunteer used anti-inflammatory medications within the past 8 weeks of enrollment, including not currently receiving nonsteroidal anti-inflammatory drugs or corticosteroids\n3. Volunteer has been diagnosed with a chronic infectious illness, inflammatory disease, malignancy, cardiac or pulmonary disease, muscle disorder, clotting disorder, metabolic disorder, systemic rheumatic or autoimmune disease, or immune-mediated disease\n4. Volunteer is pregnant (verbally screened for females of childbearing potential)\n5. Volunteer has a medical illness that in the judgement of the investigators does not allow safe blood draws or other clinical evaluations needed for study participation\n6. Volunteer is cognitively impaired\n7. Volunteer and or the volunteer's parents\u002Flegal guardian is unable or unwilling to give informed consent\u002Fassent\n8. Volunteer has functional limitations\n9. Volunteer has joint or muscle problems\n\nIn IMAGE Survey participants must confirm in the survey that they have a medical diagnosis of myositis.\n\nNote that the following screening activities may be performed to determine subject eligibility:\n\n* Email, written, or telephone communications with prospective subjects\n* Review of existing medical records\n* Review of existing imaging studies\n* Review of existing photographs or videos\n* Review of existing pathology specimens\u002Freports from a specimen obtained for diagnostic purposes\n\nIf a participant is ineligible and willing, their contact information- including name, phone numbers, emails, best times to reach, and potential diagnosis- may be shared with other NIH investigators if the participant may be eligible to participate in those studies.",true,"ALL","2 Years","100 Years",{"count":21,"type":22},1200,"ESTIMATED","OBSERVATIONAL","This study will evaluate subjects with adult- and childhood-onset myositis to learn more about their cause and the immune system changes and medical problems associated with them. Myositis is an inflammatory muscle disease that can damage muscles and other organs, resulting in significant disability.\n\nChildren or adults with polymyositis or dermatomyositis or a related condition may be evaluated under this study. Healthy children or adults will also be enrolled as \"controls,\" for comparison of test results.\n\nAll patients will undergo a complete history (including completing some questionnaires) and physical examination, review of medical records, and blood and urine tests. Patients may then choose to participate in an additional 1- to 5-day evaluation, which will include some or all of the following diagnostic, treatment or research procedures:\n\n1. Standardized muscle strength testing, range of motion of joints and walking (gait) analysis by a physiotherapist; completion of a questionnaire regarding ability to perform daily tasks\n2. Skin assessment, possibly including photographs of lesions and a skin biopsy (removal of a small skin sample under local anesthetic)\n3. Magnetic resonance imaging (scans that use magnetic fields to visualize tissues) of leg muscles\n4. Swallowing studies, including a physical examination and questionnaire on swallowing ability, studies of tongue strength, and ultrasound imaging during swallowing, and possibly, a modified barium swallow\n5. Voice and speech assessment, possibly including computerized voice analysis and laryngoscopy-analysis of the larynx (voice box) using a small rigid scope with a camera placed in the mouth to view and record vocal cord function\n6. Pulmonary function tests (measurement of air moved into and out of the lungs, using a breathing machine) to evaluate lung function and, possibly, chest X-ray\n7. Electrocardiogram (measurement of the electrical activity of the heart) and, possibly, echocardiogram (ultrasound imaging of the heart)\n8. Endocrine evaluation\n9. Eye examination, in patients with vision loss or other eye symptoms\n10. Nutrition assessment to evaluate muscle mass and muscle wasting, including tape measurements or bioelectric impedance testing, a painless procedure in which wires are attached to the extremities with a sticky paste.\n11. Muscle ultrasound.\n12. Electromyography (record of the electrical activity of muscles)\n13. Muscle or skin biopsy (removal of a small piece of muscle tissue for microscopic examination)\n\nAll patients may have only a one-time evaluation or may return for one follow-up evaluations (either the 1-day or 3- to 5-day evaluation) over a 1-year period.\n\nHealthy children will undergo a medical history and brief physical examination; blood and urine tests; speech and swallowing studies including questionnaires and physical examination, tongue strength, and ultrasound study; and bioelectric impedance testing. Children 8 to 18 years old may also have exercise testing.",[26,27,28],"Dermatomyositis","Polymyositis","Inclusion Body Myositis",[30,31,32,33,34,35],"Adult and Pediatric Disease","Autoimmunity Pathogenesis","Disease Assessment","Genetic and Environmental Risk Factors","Myositis","Natural History","RECRUITING","2026-06-27",{"date":39,"type":40},"2026-06-30","ACTUAL",{"date":42,"type":40},"1995-06-07",{"name":44,"class":45},"National Institute of Environmental Health Sciences (NIEHS)","NIH",4,{"id":48,"slug":49,"hasResults":11,"nctId":50,"briefTitle":51,"officialTitle":52,"acronym":4,"eligibilityCriteria":53,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":54,"targetDuration":4,"studyType":56,"phases":57,"briefSummary":59,"conditions":60,"keywords":4,"overallStatus":101,"whyStopped":4,"lastUpdateSubmitDate":102,"lastUpdatePostDateStruct":103,"startDateStruct":105,"completionDateStruct":107,"leadSponsor":109,"locationsCount":4},"100611443","phase-4-outcomes-from-hyperbaric-oxygen-hbo2-treatment-for-emerging-indications-100611443","NCT07240649","Outcomes From Hyperbaric Oxygen (HBO2) Treatment for Emerging Indications","Emerging Indications for Hyperbaric Oxygen Treatment","Inclusion Criteria:\n\n* Patients referred for HBOT with an emerging indication\n\nExclusion Criteria:\n\n* Contraindication to hyperbaric oxygen treatment (untreated seizures, pneumothorax, significant pulmonary airspace pathology that might lead to pulmonary barotrauma, unmanageable confinement anxiety, chronic obstructive pulmonary disease with CO2 retention)\n* Pregnant persons",{"count":55,"type":22},100,"INTERVENTIONAL",[58],"PHASE4","This study will evaluate the effectiveness of hyperbaric oxygen therapy (HBOT) on treating emerging indications (i.e., conditions that have shown to potentially benefit from HBOT) using the Multicenter Registry for Hyperbaric Oxygen Treatment. The study team aims to collect ongoing data on how well HBOT treats these emerging indications, and to add these data to the growing HBO Registry. The research team hypothesizes that HBOT will result in improvements of the condition of the various emerging indications.",[61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,28,91,92,93,94,95,96,97,98,99,100],"Post-COVID-19 Condition","Ulcerative Colitis","Crohn Disease","Calciphylaxis","Frostbite","Acute COVID-19","Pyoderma Gangrenosum","Pterygium","Hypospadias","Head Trauma","Pneumatosis Intestinalis","Ischemic Bowel","Raynaud Syndrome","Malignant Otitis Externa","Nonarteritic Anterior Ischemic Optic Neuropathy","Central Retinal Vein Occlusion","Femoral Head Necrosis","Invasive Fungal Infection","Chronic Anal Fissure","Vasculitic Ulcer","Graft-vs-Host Disease","Decubitus Ulcer","Greater Trochanteric Pain Syndrome","Rectovaginal Fistula","Pouchitis","Tinnitus","Clostridium Enterocolitis","Branch Retinal Artery Occlusion","Axonotmesis","Multiple Sclerosis","Epidermolysis Bullosa (EB)","Osteonecrosis","Ulcer Ischemic","Avascular Necrosis of Bone","Prosthesis Related Infections","Facial Filler Injections","Cystitis Chronic","Ligament Injury","Anastomosis, Leaking","Cartilage Injury","NOT_YET_RECRUITING","2026-05-01",{"date":104,"type":40},"2026-05-05",{"date":106,"type":22},"2026-08",{"date":108,"type":22},"2035-12",{"name":110,"class":111},"Jay C. Buckey Jr.","OTHER",{"id":113,"slug":114,"hasResults":11,"nctId":115,"briefTitle":116,"officialTitle":117,"acronym":4,"eligibilityCriteria":118,"healthyVolunteers":16,"sex":17,"minAge":119,"maxAge":4,"enrollmentInfo":120,"targetDuration":4,"studyType":23,"phases":4,"briefSummary":122,"conditions":123,"keywords":124,"overallStatus":101,"whyStopped":4,"lastUpdateSubmitDate":133,"lastUpdatePostDateStruct":134,"startDateStruct":136,"completionDateStruct":138,"leadSponsor":140,"locationsCount":142},"100634154","ibm-dietary-surveillance-study-100634154","NCT07535996","IBM Dietary Surveillance Study","Surveying the Dietary Intake, Physical Activity Patterns, Muscle Strength and Morphology of Adults With Inclusion Body Myositis","Inclusion Criteria (Adults with IBM):\n\n* Diagnosis of Inclusion Body Myositis: As defined by the revised European Neuromuscular Centre 2013 diagnostic criteria (Definite or Probable IBM)\n* Age: Adults aged ≥40 years at the time of consent.\n* Ability to Provide Informed Consent: Participants must be cognitively capable of providing written, informed consent.\n* Disease Progression: Participants must be able to walk short distances, with or without the use of an assistive aid (e.g., a cane or frame) for balance, so that they can undertake study procedures without safety concerns. Must be able to consume solid or modified-texture food, with or without dysphagia adaptations (i.e., not exclusively tube-fed).\n* Willingness to Participate: Willing to attend study visits and comply with all study procedures.\n\nInclusion Criteria (Control Participants):\n\n* Disease-Free: Control participants must be generally healthy, with no known myopathies or metabolic diseases. They must not have any conditions that, in the judgement of a clinician, would compromise their safety, impair their ability to complete study procedures, or influence study outcomes.\n* Age: Adults aged ≥40 years at the time of consent.\n* Ability to Provide Written Informed Consent\n* Willingness to Participate\n* Matched to IBM participants according to their age and physical activity levels\n\nExclusion Criteria (Adults with IBM):\n\n* Coexisting Neuromuscular or Metabolic Disorders: Presence of other neuromuscular or metabolic disorders that may confound the outcomes of interest.\n* Severe Dysphagia: Participants requiring exclusive enteral or parenteral feeding, which would prevent participation in dietary intake assessments.\n* Enrolment in an interventional trial within the past 3 months: Participation in an interventional study within the past 3 months involving interventions that may affect dietary habits, physical activity, or muscle metabolism.\n* Contraindications to any Study Procedures: Any condition preventing safe completion of key assessments. For instance: severe osteoporosis contraindicating DXA scanning (T-score \\\u003C -3.0), respiratory conditions, severe claustrophobia, severe cognitive impairments or communication barriers that may impair participant ability to comply with study procedures.\n* Logistical Concerns: Any other logistical concern, as judged by the CI, that would compromise participant safety or the integrity of study data.\n* English Comprehension: Participants will be excluded if they are unable to understand written or verbal English to a degree that would impair their ability to provide informed consent or fully understand the study procedures.\n\nExclusion Criteria (Control Participants):\n\n* Diagnosed neuromuscular or metabolic Disorder\n* Enrolment in an interventional trial within the past 3 months\n* Contraindications to any study procedures such as those listed for IBM participants (e.g., DXA, MRI).\n* Logistical or safety concerns, as judged by the research team.\n* To minimise dietary overlap, individuals living in the same household as an IBM participant will not be eligible.\n* Do not meet the physical activity criteria to be appropriately matched to an IBM participant\n* Unable to understand written or verbal English","40 Years",{"count":121,"type":22},47,"The goal of this observational study is to understand how diet may influence the disease characteristics of inclusion body myositis (IBM). Research findings will help determine whether dietary factors could play a role in managing IBM.\n\nThe study aims to answer the question: Does diet affect the muscle health and functional ability of people living with IBM?\n\nResearchers will compare adults with IBM to healthy volunteers aged 40 years and older. This comparison will help to identify which findings are related to normal ageing and which are specific to IBM.\n\nParticipants will:\n\nAttend an initial screening visit at the Manchester Metropolitan University Institute of Sport to confirm eligibility and explain study procedures.\n\nComplete four weeks of home-based monitoring, including dietary records, physical activity monitoring, and questionnaires about lifestyle and symptoms.\n\nAttend a second university visit for assessments of body composition, metabolism, and muscle function.",[28],[28,125,126,127,128,129,130,131,132],"IBM","Skeletal muscle","Aging","Muscle function","Muscle strength","Case-control study","Diet","Nutrition","2026-04-10",{"date":135,"type":40},"2026-04-17",{"date":137,"type":22},"2026-04-30",{"date":139,"type":22},"2026-12-31",{"name":141,"class":111},"Manchester Metropolitan University",1,{"id":144,"slug":145,"hasResults":11,"nctId":146,"briefTitle":147,"officialTitle":148,"acronym":4,"eligibilityCriteria":149,"healthyVolunteers":11,"sex":17,"minAge":150,"maxAge":4,"enrollmentInfo":151,"targetDuration":4,"studyType":56,"phases":153,"briefSummary":155,"conditions":156,"keywords":174,"overallStatus":36,"whyStopped":4,"lastUpdateSubmitDate":179,"lastUpdatePostDateStruct":180,"startDateStruct":182,"completionDateStruct":184,"leadSponsor":186,"locationsCount":142},"100629707","effects-of-whole-body-electrical-muscle-stimulation-exercise-on-adults-with-neuromuscular-disease-100629707","NCT07478172","Effects of Whole-body Electrical Muscle Stimulation Exercise on Adults With Neuromuscular Disease","Effects of Whole-body Electrical Muscle Stimulation Exercise on Adults withNeuromuscular Disease","Inclusion Criteria:\n\n* Age 18 or older\n* Diagnosed with one or more of the following neuromuscular conditions: Amyotrophic lateral sclerosis, primary lateral sclerosis, progressive muscle atrophy, spinal muscular atrophy, postpolio syndrome, inclusion body myositis, pompedisease, fascioscapulohumeral muscular dystrophy, charcot marie tooth disease, chronic inflammatory demyelinating polyneuropathy, hereditary spastic paraplegia, myasthenia gravis, lambert-eaton myasthenic syndrome, postural orthostatic tachycardia syndrome, mitochondrial myopathy, nemaline myopathy, centronuclear myopathy, lumbar radiculopathy, non-specific low back pain.\n* Ability to stand for approximately 15 minutes continuously with or without an assistive device (i.e. the length of time to stand to take a shower, complete meal preparation, wait in line at the bank, etc.)\n* At least some anti-gravity strength in major muscle groups as assessed by manual muscle testing (i.e. 2+\u002F5 strength or better)\n* Medical clearance to participate in an exercise program\n* Ability to provide informed consent\n* Ability to conform to the requirements of the study (i.e. attendance at assessment and intervention visits, maintain current level of non-study physical activity for the duration of the study, no intention to relocate mid-study)\n\nExclusion Criteria:\n\n* Diagnosed with one of the following neuromuscular conditions: Becker's muscular dystrophy, Duchenne muscular dystrophy, limb-girdle muscular dystrophy, myotonic dystrophy type 1 or 2, Freidrich's ataxia, any other NMD with known or suspected cardiac involvement or muscle fiber structural integrity defects.\n* Concurrent participation in another interventional research study\n* Unable to tolerate 15 minutes of continuous standing with or without an assistive device\n* Presence of a pacemaker, metal implants, or other implanted medical devices that could impact participant safety during WB-EMS intervention\n* Presence of cochlear implant, cortical stimulator, deep brain stimulator, ventriculoperitoneal shunt, recent skull defect, seizure in the past 12 months while taking anti-epilepsy medication, or previous serious adverse event with TMS, which could impact participant safety during TMS testing\n* Presence of unstable acute or chronic disease (i.e. renal failure, rheumatologic disease, cardia arrhythmia, neoplasm, uncontrolled hypertension)\n* Known pregnancy at time of screening; verbal screening will occur throughout the study.\n* Presence of a terminal disease (i.e. receiving hospice services)\n* Current or previous use of any drugs known to influence muscle mass or performance within 6 months; these may include but are not limited to anabolic steroids, IGF01, growth hormone, replacement androgen therapy, anti-androgen therapy\n* Presence of an additional neurologic conditions affecting somatosensory or motor function\u002Fcontrol (i.e. Parkinson's disease, Multiple Sclerosis, h\u002Fo stroke, TBI, SCI, ataxia, apraxia, hemiplegia, etc.)\n* Musculoskeletal condition or surgery in the past year that would confound results of exercise interventions (i.e. TKA, THA, RTC repair, spinal fusion)\n* Other medical conditions, signs, or symptoms that would interfere with study conductor interpretation of results as determined by an investigator","18 Years",{"count":152,"type":22},50,[154],"NA","This single-arm pilot study evaluates the effects of whole-body electrical muscle stimulation (WB-EMS) exercise on neuromuscular and physical function in adults with neuromuscular disease (NMD). Due to motor unit impairments, NMD patients often cannot tolerate traditional exercise. WB-EMS bypasses voluntary activation limits by directly stimulating muscle contractions. Up to 50 adults with conditions like ALS, SMA, and MG will undergo 20-minute supervised WB-EMS sessions (1-2 times weekly for 4-8 weeks) using the Katalyst system. Outcomes include neural excitability (TMS), motor unit behavior (EMG, NCS), functional tests (walk, balance, strength), and patient-reported fatigue, pain, and quality of life. Strict safety monitoring and exclusion criteria are in place. This study will provide preliminary data on WB-EMS as a potential exercise modality for NMD.",[157,158,159,160,161,162,163,164,28,165,166,167,168,169,170,171,172,173],"Neuromuscular Diseases (NMD)","Amyotrophic Lateral Sclerosis","Myasthenia Gravis","Lambert-eaton Myasthenic Syndrome","Primary Lateral Sclerosis","Spinal Muscular Atrophy","Charcot Marie Tooth Disease (CMT)","Fascioscapulohumeral Muscular Dystrophy","Mitochondrial Myopathy","Nemaline Myopathy","Centronuclear Myopathy","Postpolio Syndrome","Pompe Disease (Late-onset)","Chronic Inflammatory Demyelinating Polyneuropathy","Hereditary Spastic Paraplegia","Postural Orthostatic Tachycardia Syndrome (POTS)","Progressive Muscular Atrophy",[175,176,177,178],"Neuromuscular Disease","Electrical Stimulation","Whole Body stimulation","Exercise intervention","2026-03-12",{"date":181,"type":40},"2026-03-17",{"date":183,"type":40},"2026-03-10",{"date":185,"type":22},"2031-01-07",{"name":187,"class":111},"University of Missouri-Columbia",{"id":189,"slug":190,"hasResults":11,"nctId":191,"briefTitle":192,"officialTitle":193,"acronym":194,"eligibilityCriteria":195,"healthyVolunteers":11,"sex":17,"minAge":196,"maxAge":4,"enrollmentInfo":197,"targetDuration":4,"studyType":23,"phases":4,"briefSummary":199,"conditions":200,"keywords":208,"overallStatus":36,"whyStopped":4,"lastUpdateSubmitDate":218,"lastUpdatePostDateStruct":219,"startDateStruct":221,"completionDateStruct":223,"leadSponsor":225,"locationsCount":142},"100621706","mihra---patient-rooted-insights-for-shaping-myositis-science-prisms-100621706","NCT07374107","MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)","MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS) - A Qualitative Study of Patient-voiced Research Priorities Across Rare Myositis Diseases","MIHRA-PRISMS","Inclusion Criteria:\n\n* Ability to provide informed consent\n* 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.\n* Participants who may have signed up through the MIHRA Patient Contact Registry https:\u002F\u002Fmihrafoundation.org\u002Fmihra-programs\u002Fmihra-patient-contact-registry\u002F\n\nExclusion Criteria:\n\n* Under the age of 7 years old\n* Do not have a diagnosis of an inflammatory myopathy","7 Years",{"count":198,"type":22},700,"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.\n\nPotential participants can express interest via https:\u002F\u002Fmihrafoundation.org\u002Fmihra-programs\u002Fmihra-patient-contact-registry\u002F",[125,201,34,202,26,203,204,205,27,28,206,207],"IIM","Inflammatory Myopathy","Dermatomyositis, Juvenile","Anti-synthetase Syndrome","Immune-Mediated Necrotizing Myopathy","Juvenile Myositis","Juvenile Dermatomyositis",[209,210,211,212,213,214,215,216,217],"myositis","rare diseases","patient priorities","patient engagement","patient initiated","patient research partners","qualitative research","mixed methods research","research priorities","2026-01-20",{"date":220,"type":40},"2026-01-28",{"date":222,"type":40},"2025-06-25",{"date":224,"type":22},"2030-12",{"name":226,"class":111},"Myositis International Health & Research Collaborative Alliance Foundation"]