Patient Research Library
Find the latest information on research, clinical trials and materials in non-technical language to enhance patient education and awareness. Stay updated with the latest breaking news and calls to action for our myositis community that impact research, drug development, and healthcare.
New CAR-T Therapy Data Show Encouraging Results in DermatomyositisBlog, DM, Educational, Clinical Trials, Treatments- Decoding CAR Therapies and Clinical TrialsBlog, ASyS, DM, IMNM, PM, Educational, Clinical Trials, Treatments
- Understanding CAR T Cell TherapyBlog, ASyS, DM, IMNM, PM, Educational, Clinical Trials, Treatments
Understanding Clinical Trials in MyositisInsights and Perspectives, ASyS, DM, IMNM, PM, Educational, Webinar, Advocacy, Clinical Trials- Mitochondria First in Inclusion Body Myositis (IBM)Insights and Perspectives, IBM, Educational, Webinar, Advocacy
- MyoConnect Advocacy & Education Summit: CAR T Cell TherapyInsights and Perspectives, ASyS, DM, IMNM, PM, Educational, Webinar, Advocacy, Clinical Trials, Treatments
- CAR T FAQ Patient Brochure:Materials, ASyS, DM, IMNM, PM, Educational, Clinical Trials, Treatments
- Standardized Interoperable Data Collection for Myositis Research: Developing Expert Consensus on Common Data Elements for Myositis Outcome MeasuresPublications, ASyS, DM, IBM, IMNM, PM, Educational, Symptoms & Diagnosis, Treatments
- The caregiver burden of idiopathic inflammatory myopathiesPublications, ASyS, DM, IBM, IMNM, PM, Educational, Advocacy, Caregivers, Coping
- Atlas of Care: Mapping the Invisible World of Care in MyositisMaterials, ASyS, DM, IBM, IMNM, PM, Educational, Advocacy, Caregivers, Coping
- Determing patient and carer priorities in inclusion body myositis: a patient-led research studyPublications, IBM, Dysphagia, Falls, Fatigue, Muscle weakness, Educational, Advocacy, Caregivers, Coping
- Pain profile and opioid medication use in patients with idiopathic inflammatory myopathiesPublications, ASyS, DM, IBM, IMNM, PM, Muscle weakness, Pain, Educational, Advocacy, Symptoms & Diagnosis
