RARE-X Research Readiness Program

The Research Readiness Program helps identify needs in a community’s clinical trial readiness, and – with input from clinical experts and drug developers – prioritize the gaps for investment. Connecting patient advocacy groups, their key researchers, and a mentor from RARE-X’s Corporate Alliance Council, participants are able to:

• Systematically assess the landscape of clinical & laboratory research & patient engagement activities that are needed for a community to be prepared for biopharma investment & clinical trials.
• Work with the patient community to communicate the value of patient data to a research readiness assessment. Galvanize the community to collect data on the RARE-X data collection platform (DCP), which will be analyzed and share with potential academic and biopharma partners.
• Work with clinical and laboratory experts to determine ways that the data collected on the RARE-X platform can be used to support their research efforts.
• Review the landscape to identify gaps in research readiness, and review that with therapeutic experts from the Global Genes Scientific Advisory Board. Prioritization of those gaps is done with the goal of reducing time to meaningful therapeutic research, and highlights the greatest opportunities for patient advocacy group efforts, including funding and partnerships.