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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:
 Data Use Policy - click below to expand

LONGITUDINAL DATA
At the present time, USIDNET does not have an abundance of chronological patient data to provide reliable longitudinal analysis of disease. Please keep this in mind when considering queries that are exploring immune deficiency in this manner.
INCIDENCE / PREVALENCE
USIDNET is a patient-consented research study. It does not encompass all individuals in the United States with a primary immunodeficiency disease. Therefore, the USIDNET registry cannot be used to form conclusions on incidence or prevalence of any primary immunodeficiency diseases.
REQUESTS TO VIEW ALL FIELDS
USIDNET will release the clinical data necessary to successfully satisfy a discrete research question. Each query submitted must be justified by a research initiative, question or hypothesis. USIDNET does not release unlimited clinical information contained within the registry for the purposes of data mining or general review. All queries are reviewed by the USIDNET Steering Committee, and where applicable the pertinent Disease Specific Working Group, to determine whether the fields requested are reasonable and pertinent to the research question presented. Other uses of USIDNET data can be arranged at the discretion of the Steering Committee, keeping in mind that ultimate use of the data must benefit patients with primary immune deficiency.
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.
After you have clicked Submit, please check your email for a confirmation notice. Clicking Submit again may result in multiple form submissions.