In 2012, Andrea Meyer decided she had to do something. A patient with Crohn’s disease, Meyer was tired of sitting around and not helping move the needle forward in research of inflammatory bowel diseases (IBD). But without a background in medicine or science, she wasn’t sure how she could have an impact beyond donating blood or stool to be studied.

Platform for patients

Then Meyer found a patient-powered research network allowing patients just like her to partner with researchers and develop study ideas based upon their own experiences and observations of IBD. She signed up for the online patient registry and began completing health surveys and posing questions for research.

While it may seem simple, her contributions to research of Crohn’s disease and ulcerative colitis are profound. Last month, the Patient-Centered Outcomes Research Institute awarded $2.5 million to fund a study examining dietary interventions in patients with Crohn’s disease, a study motivated by a patient-generated research question and Meyer’s contributions in the patient registry.

“'Patients receive the benefits of being heard and obtaining information,' she adds, 'and research can be advanced through the data patients very happily and willingly supply.'”

How registries help

According to the National Institutes of Health, “[Patient] registries can be used to recruit patients for clinical trials to learn about a particular disease or condition; to develop therapeutics or to learn about population behavior patterns and their association with disease development; developing research hypotheses; or for improving and monitoring the quality of health care.”

Many of these patient registries are led by patient foundations with the purpose of creating patient-centered research. The patients and research community work together as a team to advance research of new treatments, health behaviors and quality of life. Only patients can provide information about their day-to-day disease experience. And it is this data, gathered over time, that researchers need to make progress in areas that matter most to patients.

Andrea’s effect

According to Meyer, "Patient registries afford patients an opportunity unlike any other in the past. Different from support groups or organized social events, registries offer a mutually beneficial relationship between patients and research. Patients receive the benefits of being heard and obtaining information,” she adds, “and research can be advanced through the data patients very happily and willingly supply.”

Patient registries have great potential to make a profound impact on medical research. As technology continues to evolve, these registries will be key in providing reliable qualitative data to researchers seeking patient input in their studies. Patients looking to get involved in research should look no further than patient registries—every patient, just like Andrea, can make a difference.