Patients can participate here:
Sign up for our PTEN Patient Registry by clicking here
What is a patient-powered registry?
We are excited to bring you a-patient-powered registry. A patient registry is an organized system that uses observational study methods to collect uniform data, clinical and other, to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose. Our registry will be patient-driven.
The purpose is to engage our PHTS community in the data sharing process accelerating research and drug development.
What are the benefits?
- To characterize and describe our patient population as a whole.
- To facilitate the development of international best practices and academically agreed-upon care guidelines.
- To provide our families with up-to-date information on current clinical trials.
- One concern expressed by our community is a lack of shared data. We will share real-time de-identified anonymous reports with you after 100 patients have enrolled.
How will it work?
- When you complete registration you will receive a validation email in your inbox within minutes. If you do not see the validation prompt, please check spam and let us know.
- It will take you approximately one hour to complete registration and surveys. Please note that you can save your progress and return to finish if necessary.
- Please have medical records handy to upload to the registry including your genetic report. If you do not have this information, please request from your diagnosing physician. You will also be able to enter your specific genetic mutation without your report. However, it will be helpful to have a report to validate the information.
**Note** Our registry is open to all PTEN researchers around the world who are willing to follow strict guidelines to access the data. You only need to share your information in one registry and our registry is designed to complement existing registry efforts. Your data shared in our registry will never be sold.
Researchers, please contact kristin@ptenregistry.org or andrea@ptenregistry.org for data-sharing application guidelines.
Patients and families, if you have difficulty registering, please email: pten@ptenregistry.org
PTEN Registry Flyer Draft (1) (1) (1)
