The Federal and Drug Administration (FDA) launched consultation process, through electronic, written, and paper submissions, to collect information on the steps and approaches to put into place a RD clinical trials network. Submissions are open to RD patients, their caregivers, patient organisations, health care specialists, the scientific community, and regulatory authorities.

The register will collect information on the way to start and sustain clinical trial networks, specific, immediate and long-term objectives, networks’ organisational structures, models of governance, infrastructure and timelines for starting up, as well the potential barriers and challenges they have identified. The consultation will run until 31 July 2020.