PI CONNECT combines the information you enter into your IDF ePHR, with your clinical data provided from your physician and entered into the USIDNET registry. When you join PI CONNECT, you agree to share your de-identified (which means it cannot be traced back to you) health information with USIDNET. This allows physicians and researchers to gain a better understanding of PI diseases, their outcomes and treatments.
The first step is to create an ePHR account. IDF ePHR is the electronic personal health record designed specifically for the PI community. It is a free, secure platform where you can store and track your own health information. When you sign up for an ePHR, you’ll be asked to enter some basic information. If you have a PI diagnosis, you will be asked to consent into PI CONNECT. Once you consent, you are automatically entered into the USIDNET registry!*
You can find detailed information about PI CONNECT, the consent process, our privacy policies and how to get started at www.idfpiconnect.org
*After you consent, you will receive a welcome email inviting you to join the PI CONNECT forum, where you can participate in research conversations, along with a request to complete an electronic Authorization for Release of Medical Records. This form indicates to your physician that you have given us permission to obtain your clinical data to be entered into the registry.