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.