Part of an initiative by the Pre-eclampsia Foundation in the US, The Pre-eclampsia Registry, aims to create a partnership between women who have had pre-eclampsia and researchers in order to advance understanding. Registered participants share their experiences, and approved researchers are provided with access to “de-identified” health information –information that does not contain participant names or contact information. This helps researchers to find patterns that can lead to findings and further studies. The registry also accelerates studies as researchers are able to gather cohorts for new studies or pose new questions.
The Pre-eclampsia Registry also gives its participants the option of learning about other research studies for which they may qualify and provides them with the means of connecting with researchers.
Most importantly, patient registries unite the patient voice with research. Patients have questions, theories, and interests that are often different from investigators conducting formal research. By engaging patients in the research process, as we can through patient registries, the chances for discovery and improvement are an even greater possibility.
If you are interested in finding out more and signing up, please visit the site here.