USIDNET: A strategy to build a community of clinical immunologists

Kathleen E. Sullivan*, Jennifer M. Puck, Luigi D. Notarangelo, Ramsay Fuleihan, Tara Caulder, Connie Wang, Marcia Boyle, Charlotte Cunningham-Rundles

*Corresponding author for this work

Research output: Contribution to journalArticle

15 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)428-435
Number of pages8
JournalJournal of Clinical Immunology
Volume34
Issue number4
DOIs
StatePublished - May 2014

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Keywords

  • Primary immune deficiency
  • comparative effectiveness
  • immunoglobulin
  • registry

ASJC Scopus subject areas

  • Immunology and Allergy
  • Immunology

Cite this

Sullivan, K. E., Puck, J. M., Notarangelo, L. D., Fuleihan, R., Caulder, T., Wang, C., Boyle, M., & Cunningham-Rundles, C. (2014). USIDNET: A strategy to build a community of clinical immunologists. Journal of Clinical Immunology, 34(4), 428-435. https://doi.org/10.1007/s10875-014-0028-1