A person raising their hand during a presentation.

Educating patient advocacy groups benefits the entire research enterprise

Putting the focus on Good Clinical Practices for patients’ own studies.

By Stephanie Christopher, The Association of Clinical Research Professionals (ACRP)

Increasing numbers of patient advocacy groups are carrying out their own research projects, including natural history studies and patient registries. This research is an important step in generating interest from academic or industry researchers, and assuring that all research is conducted using Good Clinical Practices (GCPs) maximizes its ability to appeal to these potential partners.

“Research-experienced patient advocates may have in-depth knowledge of research practices,” notes Stephanie Christopher, MA, CCRC, FACRP, Director of Patient Advocacy at Pfizer. “For patient advocates who are involved in research for the first time, however, it is critical that appropriate educational resources are available. This will give them the tools to ensure they comply with regulations while tailoring research to their community’s specific needs, generating useful data for future clinical trials and avoiding a risk of having to start over.” Read more …