Utilization of CoRDS registry to monitor quality of life in patients with VCP multisystem proteinopathy
The VCP CoRDS Registry was found to be a valuable tool for monitoring the QOL in patients with VCP disease and capturing patient perspectives for future clinical trials.
Authors
- Leepakshi Johar
- Allison Peck
- Virginia Kimonis (ORCID: https://orcid.org/0000-0003-1567-4449)
- Eiman Abdoalsadig
- Merwa Hamid
Institutions
- University of California, Irvine (US)
- Yale University (US)
- University of California, Irvine Medical Center (US)
- Time Warner (United States) (US)
- Western University of Health Sciences (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-04-14
- DOI
- https://doi.org/10.1186/s13023-025-03567-w
- Primary Topic
- Amyotrophic Lateral Sclerosis Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00