Participants

Preparation

Patient Engagement

  • If you are serving in an advisory role, you can and should advocate for the Return of Results in study materials you review
  • Patient Advocacy Organizations can also call for Return of Results as part of their work. Continued requests from the Patient/Participant community can help to normalize the practice of returning results

On Study

Enrollment/Informed Consent

  • It is important to ask questions during enrollment and informed consent about whether and how results will be returned to you, and if not, why not. Which results will be returned and when? This information can help you decide if participating in a study is right for you, and if you want to receive the results that will be offered to you. There is no obligation to receive results, and you should discuss this with your study team
  • It is important to identify someone who could receive results on your behalf if you are unable to receive these when they are available to participants. This is especially important if you decide to receive genetic results since they may have implications for your family members.

Early and Mid-Study

  • If you want to leave a study or are withdrawn before the study ends, make sure to ask about how results will be returned to you, if those details were not readily provided.
  • From time to time, you may be asked to reassess whether you want to receive your results or not, or you could think about it on your own. If you change your mind about receiving results, make sure to tell the study staff

End of Study

Last visit

  • Be prepared with any questions you have before your last visit. Know that even though your own participation is ending in a study, it can be months or years before the study ends for the rest of the participants. This will affect when you receive certain results from the study. Make sure you know what to expect and when. Make sure you communicate any updated contact information now and also be sure you know who to update if your contact information changes before results are provided to you
  • Your last visit can also be a time to reassess whether you want to receive your results or not. The study team may ask you about this decision, or you could think about it on your own. If you change your mind about receiving results, make sure to tell the study staff

Receiving Results

  • When you receive results, you may have questions or want more information. Different studies will have different resources for you. Make sure to take advantage of resources offered to you by the study. You can also discuss results with your healthcare provider
  • Genetic results about you may impact your family members as well. Linked below are resources to support these conversations

Resources for Participants:

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