Request a custom dataset!
Thank you for your interest in USIDNET registry data. Please keep in mind that 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.
There are two USIDNET data sets.
USIDNET V1 includes data on >5000 patients. These data are robust for association studies and cross-sectional questions. Please see our publication list for representative examples and our dashboard for descriptive statistics. These data are available for queries currently.
USIDNET V2 is being populated currently. We have >500 patients with structured yearly updates. This data set is best for longitudinal questions and has a rich set of labs and medications. Please be patient while we build our new registry and provide a list of fields that can be queried.
Currently the USIDNET V1 registry is open for queries but please check back for questions better answered by data from USIDNET V2. USIDNET V1 is best for associations between conditions and cross sectional data. USIDNET V2 will have richer longitudinal data.
Get started today by completing our online request form!
Before you continue, we ask that you read and agree to adhere by the standards of the USIDNET Data Use Policy and the USIDNET Publication Policy.