About
About USIDNET
The United States Immunodeficiency Network (USIDNET) is a research consortium established to advance scientific research in the field of primary immunodeficiency diseases (PI) by assembling and maintaining a registry of clinical data from patients with PI, providing education and mentoring for young investigators and physicians in the field of PI, and acting as a resource for clinical and laboratory research.
A program of the Immune Deficiency Foundation (IDF), USIDNET is funded by a cooperative agreement, U24AI086037, from the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institutes of Health (NIH), an agency of the Department of Health & Human Services. NIAID supports research to advance the understanding of transplantation and to prevent, diagnose and treat infections and Immune-mediated illnesses. IDF provides administrative support for USIDNET and developed the initial Registry of patients with PI that has grown to become the current Registry.
Our national patient-consented registry is designed to obtain longitudinal data on a large number of individuals with known or suspected PI. By putting information about individuals with PI from many places into a single registry, we hope to gain knowledge about the rate of occurrence, causes, natural history, and outcomes of PI.
History
In 1992, the National Institute of Allergy and Infectious Disease (NIAID) along with National Institutes of Health (NIH) contracted with IDF to develop a registry of patients with Chronic Granulomatous Disease (CGD). With the success of that initial registry, NIAID expanded the contract in 1998 to include eight different immunodeficiency diseases including (in addition to CGD): X-linked Agammaglobulinemia (XLA), Common Variable Immune Deficiency (CVID), X-linked Hyper IgM (X-HIGM), Leukocyte Adhesion Deficiency (LAD), Severe Combined Immune Deficiency (SCID), DiGeorge Syndrome (DGS) and Wiskott-Aldrich Syndrome (WAS).
At the same time, the sponsoring Institutes recognized that there was a shortage of clinical investigators who had made a career choice to focus on the study and treatment of PI. With the encouragement of IDF, USIDNET was formed by the leading physician-scientists in the US who had devoted their careers to the study and care of patients with PI and in October 2003, NIAID and the National Institute of Child Health and Human Development (NICHD) established a five-year contract with USIDNET. The operation of the new research consortium began and the existing registry was converted into a next generation web-based registry to collect clinical information.
Specific Aims
As detailed in our cooperative agreement, USIDNET focuses on three specific aims.
Specific Aim 1
Extend the scope, enrollment and utilization of the USIDNET Registry. The Registry contains extensive clinical and laboratory data on >4000 subjects with PIDD, collected using a core form for data common to all immune disorders as well as disease-specific forms designed by our expert subcommittees. To extend this resource we will:
Aim 1a: Enroll more patients in all categories of the Registry, collect longitudinal data, develop additional PIDD-specific forms, and further define patient outcomes using Quality of Life indicators. The advent of newborn screening for severe combined immunodeficiency (SCID) and other disorders of insufficient circulating naïve T cells requires new forms to record etiologies and trajectories of the affected infants.
Aim 1b: Expand the use of this Registry to provide organization and support for selected observational studies of high value to the patient community. Provide answers to a range of questions, stimulate research collaborations to enhance global understanding of these defects.
Aim 1c: Engage the patient community directly and link with the eHealthRecord established by the IDF, and funded by the Patient-Centered Outcomes Research Institute. Encourage patient participation by new means.
Aim 1d: Increase collaborations and data sharing between the USIDNET Registry and other NIH funded programs on PIDD: the Center for International Blood and Marrow Transplant Research (CIBMTR), the Primary Immune Deficiency Treatment Consortium (PIDTC).
Specific Aim 2:
Maintain and expand the current Repository of cell lines and other rare materials, to make available unique resources and foster collaborative basic and translational PIDD research.
Specific Aim 3:
Provide intensive training and educational opportunities to recruit physician-scientists to careers in PIDD, create unique training experiences, and encourage collaborative research. We will develop educational materials for physicians and basic researchers in allied fields and establish new venues for promoting PIDD research in the United States.
The United States Immunodeficiency Network (USIDNET) was funded by a cooperative agreement, U24AI086037, from the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institutes of Health (NIH), awarded to the Immune Deficiency Foundation (IDF). NIAID supports basic and applied research to better understand, treat and ultimately prevent infectious, immunologic, and allergic diseases. We also thank our partners from Industry, Foundations and philanthropy for continued and generous support.
