About PICONNECT



What is PICONNECT?

PI CONNECT is the Immune Deficiency Foundation’s Patient-Powered Research Network.
It connects information entered into IDF ePHR, the electronic personal health record for patients with PI, with data in the USIDNET registry to create multi-dimensional data sets. 

PI CONNECT is funded by an award from the Patient-Centered Outcomes Research Institute (PCORI).

PI CONNECT by the Numbers

Currently, there are 2,061 participants enrolled into PICONNECT. These patients may have available data regarding:

  • Symptoms
  • Infusions
  • Vital Signs
  • PROMIS quality of life measures (more information can be found here)

At minimum, we have the following information on these participants:

  • Self-identified Primary Immunodeficiency Diagnosis
  • Gender
  • Race / Ethnicity
  • Age

Of these 2,047 participants, there are 482* for whom we have clinically-verified data entered into USIDNET, including:

  • Clinical Primary Immunodeficiency Diagnosis
  • Information from clinical encounters
  • Information from laboratory reports

*Participants are asked to complete an “Authorization for Disclosure of Health Information”, which allows USIDNET to acquire clinical data to enter in the registry. As more participants complete this form, these numbers will increase.

Diagnosis Breakdown of Participants

 



*Participants with an unclear stated diagnosis fall under the “miscellaneous” category.