You can participate 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 update 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 the screening form, you will receive an account creation email within 24 hrs. Please check your spam folder if you do not see one.
- After an account is created it will take participants 1-2hrs to complete all surveys.
- You will have the opportunity to upload medical information to ensure accuracy.
- You will benefit knowing that you will drive research and the data will be shared back with you.
**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 firstname.lastname@example.org or email@example.com for data-sharing application guidelines.
Patients and families, if you have difficulty registering, please email: firstname.lastname@example.org