Improving care, education, and research: the Asian primary immunodeficiency network

Ann N Y Acad Sci. 2011 Nov:1238:33-41. doi: 10.1111/j.1749-6632.2011.06225.x.

Abstract

The field of primary immunodeficiencies (PIDs) is marked by continuous discoveries in the mechanisms of disease, genetic etiologies, and treatments. A widening gap between cutting-edge scientific research and its translation to clinical practice is noticeable. To narrow this gap, collaborative networks must be made that bring together a critical mass of specialists to share the knowledge required for the next innovations. In this paper, we describe the current status of the Asian primary immunodeficiency network, which links 40 hospitals in China and Southeast Asia. Over the past 10 years, genetic studies performed on more than 500 patients have led to genetic confirmation of primary immunodeficiency in 272 patients, as well as generating cohort studies that have provided unique phenotypic observations. The network has a dynamic capacity to accommodate priorities and interests of collaborating units, from consultations and genetic testing to scientific research involving next-generation sequencing technologies.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Asia, Southeastern / epidemiology
  • China / epidemiology
  • Education, Medical, Continuing*
  • Genetic Variation
  • Genotype
  • Health Services Research*
  • Humans
  • Immunologic Deficiency Syndromes / epidemiology*
  • Immunologic Deficiency Syndromes / genetics
  • Information Dissemination
  • Interprofessional Relations*
  • Phenotype
  • Primary Health Care
  • Referral and Consultation
  • Regional Health Planning*