Research is formalized curiosity. It is poking and prying with a purpose.
—Zora Neale Hurston, American folklorist and writer
The Research Participant Registry is a database of individuals who are willing to participate in clinical research studies at the University of Pittsburgh and/or UPMC plus an ongoing list of current studies being conducted by our researchers.
The goals of the voluntary registry are to provide community members and patients in the UPMC network opportunities to receive educational materials about clinical research and to get their permission to be contacted for study recruitment.
In doing so, CTSI hopes to create research-informed community members and patients who develop an understanding of the potential benefits of participating in clinical research studies as a way to achieve better health care for themselves and others. To sign up for the Research Participant Registry, click here.
In addition to the information in Clinical Research Opportunities, here’s some basic information specifically about the Research Participant Registry.
- Why should I sign up for the Research Participant Registry?
- What happens once I enroll?
- What safeguards are in place to protect me?
- Once I enroll, can I discontinue my participation in the registry?
- Where can I get more information about the registry?
Why should I sign up for the Research Participant Registry?
Quite simply because everyone—people with diseases and adverse health conditions as well as healthy people—can benefit in the long run from what medical science can learn from clinical research.
What happens once I enroll?
When you enroll in the Research Participant Registry, you agree to be contacted about participating in clinical research. You’ll receive information about how to join trials that are specific to your health needs or about trials that need people with your medical background. You are not required to participate in specific clinical studies for which you are contacted, but signing up for the registry is the first step in becoming eligible to do so.
What safeguards are in place to protect me?
When you agree to participate in the registry, your medical information is collected and stored in a secure central data repository, which is protected by several layers of strict protection standards—firewalls, encryption, and locked-room storage. In addition, each clinical study involving human subjects must go through an extensive process of review and approval by Pitt’s Institutional Review Board. Finally, research participants can always contact either the human subject protection advocate at the University’s Institutional Review Board (1-866-212-2688) or Pitt’s research participant advocate (412-383-5808) with any questions or concerns that might develop during the course of the clinical study.
Once I enroll, can I discontinue my participation in the registry?
Absolutely. Participation in the registry is always voluntary. If you choose to discontinue your participation, you may want to consider speaking with a research advocate about your experience so that, if necessary, your feedback can improve the experience for others and provide valuable information to researchers about the ways in which their clinical research is being conducted.
