Submit a Query

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Query Request Form
Introduction

Thank you for your interest in USIDNET registry data! USIDNET is a resource for clinical insight into all primary immunodeficiency diseases (PI). Please keep in mind that USIDNET does not have an abundance of chronological patient data to provide reliable longitudinal analysis of these diseases. The registry does not encompass all individuals in the United States with PI.

For these reasons, the USIDNET registry cannot be used to form any conclusions on incidence, outcomes or prevalence of any PI. Individuals who submit queries that do not comply with these limitations, or are otherwise not answerable with the Registry data, will be asked to revise their questions.
  • To avoid potential overlap, check our list of previous queries HERE.
Agreement
Before you continue, we ask that you confirm the following statements:
Requestor Information
E.g. Fellow, Professor, Researcher, etc.
E.g. FIT Chair, Award Recipient, etc.
About Your Query
Basic Information

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Diagnosis Information
Demographics
Vitals
Symptoms

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Treatments

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Nutritional, respiratory, educational, etc.

Transplant / Gene Therapy

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Lab Values

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Lab Responses

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Additional Fields

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PI CONNECT

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Patient Entered Data
PI CONNECT is the Immune Deficiency Foundation’s Patient-Powered Research Network. It connects information entered into IDF ePHR with data in the USIDNET registry to create multi-dimensional data sets. If you are interested in viewing patient-entered data from participants who enrolled through PICONNECT, please complete this section.
Please click Submit once. Clicking Submit again will result in multiple form submissions. If you see an error message, please rest assured that your form has been successfully submitted. We are diligently working to resolve this issue. Please check your email for a confirmation notice. It may take up to 2 minutes for the email to appear in your inbox.