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Disorders of Sex Development (DSD): Networking and Standardization Considerations.

D E Sandberg1, N Callens1, A B Wisniewski2

  • 1Department of Pediatrics & Communicable Diseases and the Child Health Evaluation and Research (CHEAR) Unit, University of Michigan Medical School, Ann Arbor, USA.

Hormone and Metabolic Research = Hormon- Und Stoffwechselforschung = Hormones Et Metabolisme
|May 14, 2015
PubMed
Summary
This summary is machine-generated.

Networking centers and patient registries are crucial for advancing care and research in rare Disorders of Sex Development (DSD). This approach improves healthcare outcomes and quality of life for individuals with DSD.

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Area of Science:

  • Medical Genetics
  • Endocrinology
  • Pediatric Endocrinology

Background:

  • Disorders of Sex Development (DSD) are individually rare, historically impeding clinical research and evidence-based care.
  • Medical societies emphasize multidisciplinary teams, networked treatment centers, and patient registries for optimal DSD healthcare.

Purpose of the Study:

  • To summarize European and U.S. network initiatives aimed at enhancing DSD research and patient outcomes.
  • To review the objectives and functions of various DSD network models.

Main Methods:

  • Review of registry-based networks (EuroDSD/I-DSD), learning collaboratives (DSD-net), clinical outcomes research (DSD-Life), and hybrid networks (DSD-TRN).
  • Analysis of opportunities and barriers to standardization in DSD research and care.
  • Consideration of patient-reported outcomes and provider-patient agreement.

Main Results:

  • Various network models (EuroDSD/I-DSD, DSD-net, DSD-Life, DSD-TRN) are being developed to improve DSD research and care.
  • Challenges include phenotypic classification and behavioral health staffing.
  • Patient-reported outcomes highlight discrepancies with healthcare provider ratings.

Conclusions:

  • Networking and standardization are essential for advancing DSD research and improving patient care.
  • Integrating patient perspectives through patient-reported outcomes is vital.
  • Identifying characteristics of high-quality DSD clinical centers is key to improving outcomes.