RareCAP provides practical guidance for patients with rare diseases

Vanderbilt University Medical Center and the Children’s National Hospital have developed an online repository of clinical protocols to assist physicians in caring for patients with rare diseases.

The Rare Disease Clinical Activity Protocol Program (RareCAP) offers practical guidance for nearly 100 rare diseases, offering physicians a time-saving resource to identify and provide appropriate care.

“If you’re in the emergency department and you’ve never seen someone with a particular rare disease, our goal is that you can come to this platform and find what you need to know immediately to treat this person in an acute care setting,” said Colleen Lawrence, PhD, an assistant director at the Vanderbilt Institute for Clinical and Translational Research and the project manager for RareCAP, in a press release.

The protocols are presented in a bullet point format and include links to in-depth online sources. They are written by contributors and reviewed by a RareCAP medical advisory board. The platform also features a messaging function that allows users to add comments or suggest revisions.

Learn more at rarecap.org/.

Reference

Govern P. New online repository offers physicians quick guidance on care of rare disease patients. VUMC News. May 15, 2024. Accessed May 28, 2024. https://news.vumc.org/2024/05/15/new-online-repository-offers-physicians-quick-guidance-on-care-of-rare-disease-patients/