Patients and patient organizations play a pivotal role in myositis research. Those who live with the disease are, in fact, the experts on myositis, and increasingly they are actively involved in academic research, national and international myositis research organizations, industry-sponsored patient advisory councils, and government supported research initiatives. The value of this expert insight is gaining greater recognition, allowing for more patient-centric projects, focusing on more relevant outcomes, and improving the quality of life for those who live with myositis worldwide.
TMA is proud to be working together with international patient advocacy organizations (PAOs) to amplify the voice of patients in myositis research around the globe.
Here are some examples of the high-value efforts these patient groups are working on:
- Cure JM was recently awarded a prestigious Chan-Zuckerberg rare disease research grant to identify new biomarkers and improve precise, personalized care by identifying specific biological interactions that drive inflammation in juvenile myositis.
- TMA partnered with Myositis Support and Understanding into conduct an Externally Led Patient Focused Drug Development (EL-PFDD) meeting on dermatomyositis with the US Food and Drug Administration last June, bringing the patient’s voice to decision-making about the drug development process.
- Myositis Association Australia together with the Myositis Discovery Programme, a research group led by TMA medical advisory Dr. Merrilee Needham, has established a Myositis Consumer Research Panel to provide a community perspective on a variety of research activities across the country.
- Patients, including TMA members, are part of myositis research working groups, including those in the US and abroad, helping to guide clinicians’ and researchers’ understanding of the experience, impact, and challenges of living with myositis.
- Patients have coauthored and contributed to the design, data analysis, publication, and dissemination of results of international collaborations such as the COVAD study, OMERACT myositis working group, and IMACS Exercise and Rehabilitation study.
- TMA and other PAOs work in partnership with pharmaceutical companies to educate members about new drugs being developed and facilitate clinical trial enrollment.
- Patient coalitions are taking a more active role in advocating for policy changes to help advance research and promote drug development for myositis.
- For the first time in 2024, TMA’s Research Grants Program included stakeholder reviewers—patients and/or care partners—who evaluate grant applications and help to decide which ones will receive funding.
Adapted from the joint Patient Advocacy Organization poster at GCOM 2024.