Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseases (ZSE-DUO): study protocol for a controlled multi-center cohort study.

ABSTRACT:

Background

In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the diagnostic process. The ZSE-DUO study aims to assess the benefits of a combination of a physician focusing on somatic aspects with a mental health expert working side by side as a tandem in the diagnostic process.

Study design

This multi-center, prospective controlled study has a two-phase cohort design.

Methods

Two cohorts of 682 patients each are sequentially recruited from 11 university-based German Centers for Rare Diseases

SUBMITTER: Hebestreit H 

PROVIDER: S-EPMC8842899 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature