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USIDNET: A Strategy to Build a Community of Clinical Immunologists

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Information about patients with primary immune deficiencies can be scarce because of the rarity of the disorders. Individual centers rarely have sufficient patients to educate trainees and garner collective wisdom. Registries for many diseases have proven their worth by providing essential information on disease spectrum, treatments and natural history. This study describes the construction and use of a registry for patients with primary immune deficiencies and other efforts to improve knowledge and care for affected patients and their families.


Registry demographics and data were extracted using proprietary reporting tools. Educational efforts and cell repository data were collected from centralized source material.


The USIDNET Registry contains 3,459 patients, with common variable immune deficiency being the most represented. Pilot studies identified strengths and weaknesses of the data. Visiting Professor and Visiting Scholar Programs have been successful, encouraging trainees at all levels to pursue a career in Immunology.


USIDNET’s comprehensive and integrated approach provides resources that strengthen the field of primary immune deficiencies, as shown by utilization by 312 distinct sites or individuals. The reach of USIDNET’s efforts is extended through the educational resources.

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The authors thank the patients and many physicians whose time and effort made the tools provided by USIDNET possible. This work was supported by U24 AI086037, Baxter, Talecris, CSL Behring, Sigma Tau, and AxelaCare.

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Correspondence to Kathleen E. Sullivan.

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Medical Centers

Advocate Hope Children’s Hospital

Ann & Robert H. Lurie Children’s Hospital of Chicago

Boston Children’s Hospital

Children’s Hospital of Pennsylvania

CHU Sainte-Justine Montreal, Canada

Cincinnati Children’s Hospital Medical Center

Cincinnati Children’s Hospital Medical Center

Cleveland Clinic

Duke University Medical Center

Emory University

Levine Children’s Hospital

Louisiana State University

Mattel Children’s Hospital Univ. of CA, LA Mayo Clinic

Medical College of Wisconsin

Miami Children’s Hospital

Mt. Sinai School of Medicine

National Institute of Allergy and Infectious Diseases

Rainbow Babies and Children’s Hospital Ohio

Seattle Children’s Hospital

Texas Children’s Hospital

University of California, San Francisco

University of Colorado, Denver

University of Iowa

University Texas (UT) Southwestern Medical Center

University of Utah

Wake Forest University

Wayne State University

Women and Children’s Hospital of Buffalo

Yale University

Children’s Hospital Orange County

Joe DiMaggio Children’s Hospital

John Hopkins Hospital

Massachusetts’s General Hospital


University of Wisconsin (New 2013)

Hackensack University Medical Center (New 2013)

Enrolling Institutions Under USIDNET IIRB

Allergy Associate of the Palm Beaches

Daniel Suez Allergy, Asthma, & Immunology

Midwest Immunology Clinic

United States Immunodeficiency Network (USIDNET)

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Sullivan, K.E., Puck, J.M., Notarangelo, L.D. et al. USIDNET: A Strategy to Build a Community of Clinical Immunologists. J Clin Immunol 34, 428–435 (2014).

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