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Request USIDNET Data

USIDNET registry data support custom queries for scientific and clinical questions. Compare the datasets, review the requirements, and submit your request.

Request a custom dataset

Important interpretation note

USIDNET does not encompass all individuals in the United States with inborn errors of immunity. For these reasons, the USIDNET registry cannot be used to form any conclusions on incidence or prevalence of any inborn error of immunity.

Registry datasets

Choose the dataset that fits your question

V1 and V2 offer different study contexts. The details below reflect current documented availability.

USIDNET V1

>5,000 patients

Available for queries

Robust for association studies and cross-sectional questions.

  • Study contextAssociation and cross-sectional research
  • Supporting contextRepresentative publications and descriptive dashboard statistics

USIDNET V2

>8,000 patients

Best for longitudinal questions, with structured yearly updates dating back to 2018.

  • Available detailRich laboratory and medication data
  • Gene-query contextSome conditions are genetically defined, but specific variants are not yet recorded. Please reach out if you wish to include a gene-based query.

Ready to request data?

Review the resources, then complete the native Squarespace request form below.

Request a custom dataset

Required reading

Before you submit

Read and agree to the two USIDNET policies, then complete the native request form below.

WEBUSIDNET Data DictionaryBrowse and download registry variables PDFUSIDNET Data Use PolicyRequired policy PDFUSIDNET Publication PolicyRequired policy