Support Clinical Trials
Tips for Success
- Keep presentations balanced. Although you want your disease community to participate in clinical trials, you also want each person or family to make the right choice for their situation. Balanced information is key to retaining your patient community’s trust.
- Set realistic expectations for any clinical trial. It is important for your disease community to understand that even interventions that make it to Phase 3 may not gain FDA approval.
- Consider an opt-out for emails and social media about new clinical trials for those that do not want to participate.
- Explore the websites of other groups to see how they provide general information about clinical trials as well as information about specific trials.
- Reach out to the study coordinator and/or principal investigator if a trial pops up for your disease community that you were not expecting.
Educating Your Disease Community
How to Get Involved in Research Genetic and Rare Diseases Information Center (GARD) (link)
Clinical Trials: What Patients Need to Know U. S. Food and Drug Administration (FDA) (link)
From Molecules to Medicine: Clinical Research Global Genes (link)
ClinicalTrials.gov National Library of Medicine (NLM) (link)
Five Principles: Returning Genetic Testing Results to Research Participants 2014 Published Article