Decentralisation and the Development of Treatments for Rare Disease

The aim of this CRC is to explore the improvement of patient access to clinical research. While our past work in this space focused on the clinical research environment in the wake of COVID-19, this year we chose to focus specifically on patients because patient trust, safety, and overall experience are critical to the success of any clinical trial.

The PPP Clinical Research Coalition programme brought together industry experts and a number of individuals with lived and clinical experience of rare disease. Through a series of four roundtables the following themes were discussed:

How can NHS and life sciences better include underrepresented groups in clinical research?
How can the embedding of clinical trials within healthcare help to grow public trust?
Decentralisation and the development of treatments for rare diseases.
Developing effective approaches to increasing trial participation.

Each roundtable results in a written Insights report containing policy recommendations.