Contract research company PRA Health Sciences has established a new Rare Disease Advisory Committee (RDAC) designed to help integrate the needs of patients into rare disease studies.
PRA says this committee is the first of its kind in the CRO world and is set up as “an independent, autonomous volunteer group advising and working with PRA’s Center for Rare Diseases to better understand the ways in which clinical trials can be revolutionized to be more effective and accessible for these patients with unique challenges.”
The committee boasts the likes of Luke Rosen, vice president and patient engagement and government affairs at Ovid Therapeutics; Terry Jo Bichell, founder and director of COMBINEDBrain; and Maureen McArthur Hart, strategic adviser at Global Genes, among others.
Committee member Sandra Stratton, president and co-founder at Lipodystrophy United, said: “Patients with rare diseases are sometimes overlooked in the development and implementation of clinical trials, and it’s our desire to make research more inclusive and sensitive to the needs of rare patients. Over the next year, our committee will be discussing many impactful ways to improve trials, and we will work with PRA to see those insights put into practice.”
The new RDAC will be complemented by the CRO’s long-established Center for Rare Diseases, which works on drug development in the rare disease space.
“Our work is centered on the patient—we want to make the clinical trial experience easier so they can focus on living a fuller life,” said Scott Schliebner, SVP for PRA's Center for Rare Diseases. “As the committee tackles important questions about the rare patient journey and their needs when participating in trials, PRA will be there to learn and collaborate with them.”
As a part of the RDAC’s work, PRA said it will also host an online community forum for rare disease patients, parents and advocates called: “The Rare Together Community.”
This aims to connect the community together “where they can discuss advocacy initiatives, challenge-solving ideas and ways to stay involved in the drug development process,” with RDAC committee members leading conversations, and moderating discussions.