Finish Later or Declined?



Before you go, we would like to make you aware of the following:

You have been asked to complete this form because you have consented into PICONNECT through your IDF ePHR.

PICONNECT combines clinical information with patient-entered information so that research can be performed on PI from MANY different perspectives. The data that is entered in USIDNET is completely de-identified and never linked to you. Rather, we are interested in collecting data on many patients to identify patterns in symptoms, laboratory markers, family history, etc., that could lead to better detection and treatments for PI diseases.

By consenting to join PI CONNECT, you agreed to allow the following:

Store de-identified data from your ePHR in the USIDNET Registry.
Combine that data with medical information provided by your physician.
Share your de-identified data with researchers in PI and other related fields to advance the knowledge and treatment of PI.

Participation, as with any research study, is completely voluntary and you can withdraw your consent at any time. If this is the case and you no longer want to be in PI CONNECT at all, please see the attached instructions on how to withdraw consent. If you would like more information about PI CONNECT, including access to the consent details, please visit our website at www.idfpiconnect.org.

Please contact the registry manager at mgoldsmith@primaryimmune.org with questions.