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Support Clinical Trials

Posting Current Clinical Trials

Alerting your disease community about currently available clinical trials can ease the burden for those wanting to participate. You may wish to:

  • Dedicate a webpage to ongoing clinical trials for your disease. Most groups place this page under the Research tab or have it listed under several tabs.
  • Explain whether the clinical trials have been vetted by your group or simply pulled in from ClinicalTrials.gov or another similar resource. 
  • Highlight any clinical trials that were supported by your group’s effort.
  • Clarify eligibility criteria as this is often the most difficult for those wanting to participate to understand.
  • Organize the information about specific clinical trials so that it focuses on factors that may be important to members of your disease community when making an informed decision about whether to join the trial.  For example, 
    • Does the type of trial mean people could end up in a placebo or control group?
    • What phase is the clinical trial?
    • Will participants be responsible for any costs?
  • Update the page regularly and Include the last-updated date in an easy-to-find place. 
    • Clinical trial status and contact information can change.
    • Develop an internal system where a staff member or volunteer regularly checks  the clinical trials listed on your page for any changes, especially in status (is it still accepting new participants) and contact information.

Resources

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