The Children’s National Hospital and Takeda recently announced the creation of a new, first-of-its-kind program to help standardize and streamline the process of diagnosis and care for individuals with rare diseases. Historically, rare disease patients must often navigate protracted and convoluted processes to reach an accurate diagnosis and to receive proper care.
According to a Takeda press release, the Rare Disease Clinical Activity Protocols (Rare-CAP) program will establish a system for the development, dissemination and “curation of protocols” to reduce barriers for researchers, clinicians, and patients in determining appropriate diagnosis and clinical care. The program will feature opportunities for ongoing input from both patients and families.
Rare-CAP will be spearheaded by the Rare Disease Institute at the new Children’s National Research & Innovation Campus, which opened in February 2021 on the grounds of the former Walter Reed Army Medical Center in Washington D.C. Takeda is supporting the launch and sustainability of the program through a five-year, $3.85 million commitment.
Another notable component of Rare-CAP is the employment of an open “wiki” format by which vetted contributors can provide near real-time data and other updates to participants.
“Just as Wikipedia revolutionized how we think of the encyclopedia, the Takeda commitment will help harness technology to revolutionize access to care standards for rare disease,” said Marshall Summar, MD, founding director of the Children’s National Rare Disease Institute and chief of the Division of Genetics and Metabolism at the hospital. “We are extremely grateful for Takeda and their support of our work to unify rare disease research and real-world clinical experience in a way that’s never been done before.”
Source: Takeda press release dated March 1, 2021