Last week, on November 14, 2024, I had the privilege of attending the NIH Myositis Common Data Elements (CDEs) Consensus Conference at NIH in Bethesda, MD. This pivotal meeting brought together researchers, clinicians, and patient representatives like myself to advance the standardization of data collection for myositis research. As the MSU representative I am excited to share how this effort aligns with our patient-centered objectives and how we can continue to contribute to this groundbreaking work.

Patient-Centered Objectives
The overarching goal of the NIH project is to develop interoperable, standardized tools for myositis research. This initiative will help improve data sharing, streamline clinical trials, and ultimately enhance patient outcomes. At MSU, we believe in empowering patients by prioritizing their perspectives in research efforts. This philosophy guides our involvement in the following goals of the project:

1. Ensuring Patient Voices Shape Research
   During the meeting, I advocated for the inclusion of patient-reported outcome measures (PROMs) and quality-of-life assessments. These tools reflect the lived experiences of patients with myositis and are critical to understanding how the disease impacts daily life. MSU will continue to champion the integration of PROMs into the core set of CDEs to ensure that patient needs remain at the center of myositis research.

2. Advancing Accessibility and Usability of Research Tools
   One of the workshop’s key outcomes was the endorsement of common data elements for myositis disease activity measures. As a voting member of the project, I look forward to ensuring that these tools are not only scientifically robust but also accessible to patients and caregivers. This means developing clear instructions, fostering understanding, and encouraging use beyond clinical settings.

3. Prioritizing Functional and Strength Measures
   Understanding the physical challenges faced by individuals with myositis, I emphasized the importance of prioritizing forms related to physical function, strength, and daily living activities. These measures provide valuable insights into the disease’s real-world impact and are instrumental in designing patient-centered interventions.

4. Collaborating on Coding Initiatives
   As part of the next phase, I am volunteering for the coding project, which focuses on refining and organizing data from validated study forms. This work is essential for creating a comprehensive repository in the National Library of Medicine’s CDE repository. By contributing to this effort, I aim to ensure the data reflects the priorities and diversity of patient experiences.

5. Shaping the Future of Myositis Research
   The workshop concluded with discussions on prioritizing additional study forms for CDE creation. With 43 potential forms under review, I highlighted the need to bring more forms that address pain and fatigue as well as falling risks in IBM.

Manuel Lubinus- Chief Science Officer MSU

On March 1, 2024, MSU's was honored to participate in the 11th Annual Rare Disease Symposium held by the Alabama Rare Disease Advisory Council at the University of Alabama in Birmingham (UAB). MSU's Vice-President Benita Moyers (Anti-MDA5 DM) presented our abstract Anti-MDA5 Dermatomyositis Patient-Led Research Survey: Unveiling Symptoms, Treatments and Trial Attitudes.  Dr. Stephen Moore (DM) presented our abstract Burden of Disease in Idiopathic Inflammatory Myopathies: First Perspectives From a Patient-Led Research Study.  Stephen also participated in the five minute Lightning Talks where he discussed the Burden of Disease study.  They were joined by one of our medical advisors, Dr. Lauren Graham, from UAB.