The Preeclampsia Foundation is not a university or research hospital, and like most other patient advocacy organizations, it does not own a state-of-the-art laboratory in which to conduct complicated experiments. However, the Preeclampsia Foundation is a large community of survivors, families, and friends joined in the search for an end to this devastating disorder. With so many questions and theories as to the cause and management of preeclampsia, a patient-driven registry (such as The Preeclampsia Registry) provides survivors and their families an opportunity to play a key role in preeclampsia research.
Participating in a registry will mean answering some questions about your experience with the condition (from a few to over a hundred). Today many registries collect this information over the Internet; however, others may collect this information at a doctor’s office or by phone with a research assistant. Some registries may ask you to provide a copy of your medical records (or permission to release them), and you may also be asked to periodically update your health information.
There are different types of registries that can serve different purposes, but ultimately, a patient registry is a platform to collect information from people who share the same condition and/or have similar experiences. In recent years, patient advocacy and rare disease organizations have become critical contributors to research through patient-driven registries. Often faced with financial barriers, these organizations have sought the most effective avenues to conduct research and create the most impact. Furthermore, these organizations consist of communities of volunteers who are enthusiastic to move research forward, looking for ways to help, and can create a resource unmatched in the clinical research arena.
You may be wondering where this information goes and how it helps to accelerate research. Some researchers just need information (or data) to test their theories, while others also need research participants to enroll in clinical trials. Registries can expedite the research process by providing researchers with valuable information and participants that would otherwise have been more difficult and time-consuming to find.
The Preeclampsia Registry, for example, provides approved researchers with access to “de-identified” health information – information that does not contain participant names or contact information. This helps researchers to find patterns among preeclampsia survivors that can lead to findings and further studies. Researchers may also pose new questions to a large and willing audience, a strategy that usually takes much longer without a registry.
The Preeclampsia 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 these researchers.
Most importantly, patient registries unite the patient voice with clinical 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.
For more information about patient registries, visit http://www.nih.gov/health/clinicaltrials/registries.htm
To learn more about The Preeclampsia Registry, go to www.preeclampsiaregistry.org
