USIDNET: a strategy to build a community of clinical immunologists.

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 con

SUBMITTER: Sullivan KE 

PROVIDER: S-EPMC4046905 | biostudies-literature | 2014 May

REPOSITORIES: biostudies-literature