Tuesday, August 21, 2018

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 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?

You will have online access to fill out simple surveys and will have the opportunity to consent to be contacted by PTEN researchers. We will share de-identified reports with you a regular basis. If you are interested in participating please fill out the form below and refer to our listed privacy policy. (By filling out the form below you are not consenting to participate, you are expressing interest to be contacted when the registry is live.)