TY - JOUR
T1 - USIDNET
T2 - A strategy to build a community of clinical immunologists
AU - Sullivan, Kathleen E.
AU - Puck, Jennifer M.
AU - Notarangelo, Luigi D.
AU - Fuleihan, Ramsay
AU - Caulder, Tara
AU - Wang, Connie
AU - Boyle, Marcia
AU - Cunningham-Rundles, Charlotte
N1 - Funding Information:
Acknowledgments 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.
PY - 2014/5
Y1 - 2014/5
N2 - Objectives: 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. Methods: Registry demographics and data were extracted using proprietary reporting tools. Educational efforts and cell repository data were collected from centralized source material. Results: 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. Conclusions: 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.
AB - Objectives: 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. Methods: Registry demographics and data were extracted using proprietary reporting tools. Educational efforts and cell repository data were collected from centralized source material. Results: 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. Conclusions: 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.
KW - Primary immune deficiency
KW - comparative effectiveness
KW - immunoglobulin
KW - registry
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U2 - 10.1007/s10875-014-0028-1
DO - 10.1007/s10875-014-0028-1
M3 - Article
C2 - 24711005
AN - SCOPUS:84901432019
SN - 0271-9142
VL - 34
SP - 428
EP - 435
JO - Journal of Clinical Immunology
JF - Journal of Clinical Immunology
IS - 4
ER -