For Researchers

“Science does not know its debt to imagination.” — Ralph Waldo Emerson

The International Patient Registry (IPR) is committed to data sharing. The IPR is an invaluable tool for researchers who are interested in conducting observational studies about children and adults with PANS. De-identified data from this Registry is publicly available by request, subject to approval. To request IPR data, please complete a Data Request Form which includes a Data Confidentiality Agreement. 

IPR Data Use Policies & Procedures 

IPR Data Dictionaries

To help prepare for your electronic submission, you may preview the Data Request form here:

*Please note: not all questions viewed here apply to all requests

…and specify your requested variables here:

*You will be asked to upload your file in the Data Request Portal

If your institution requires IRB approval or other Human Subjects approvals (including exemptions) related to this request, documentation of this approval must be uploaded to the Portal before you may finalize your data request to the IPR.

Have Questions?  Get in Touch

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"Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before." —Jacob A. Riis