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).
Currently, there are 1,997 participants enrolled into PICONNECT. These patients may have available data regarding:
At minimum, we have the following information on these participants:
Of these 1,910 participants, there are 428* for whom we have clinically-verified data entered into USIDNET, including:
*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.
|5||Chronic granulomatous disease||16||6||22||22,00|
|6||Class switch defect||7||4||11||11,00|
|∑ = 1448||∑ = 401||∑ = 1849|
*Participants with an unclear stated diagnosis fall under the “miscellaneous” category.