Our Patient Registry is Live- **Click the link below to participate**
PTEN Patient Registry and Natural History Study
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.
What is the purpose?
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 care management guidelines and recommendations for improving the quality of life.
- To provide information regarding ongoing IRB-approved research and clinical trials.
- One of the main concerns expressed by our patient community is the lack of shared patient-friendly data. We believe sharing de-identified data back with our patient community will engage and empower you, launching research forward. We aim to unify the patient and research community with this collaborative registry following strict data sharing guidelines.
How it will 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