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.
Helge HebestreitCornelia ZeidlerChristopher SchippersMartina de ZwaanJürgen DeckertPeter HeuschmannChristian KrauthMonika BullingerAlexandra BergerMark BerneburgLilly BrandstetterAnna DeibeleJan Dieris-HircheHolm GraessnerHarald GündelStephan HerpertzGereon HeuftAnne-Marie LapstichThomas LückeTim MaischChristine MundlosAndrea Petermann-MeyerSusanne MüllerStephan OttLisa PfisterJulia QuitmannMarcel RomanosFrank RutschKristina SchaubertKatharina SchubertJörg B SchulzSusann SchweigerOliver TüscherKathrin UngethümThomas O F WagnerKirsten Haasnull nullPublished in: Orphanet journal of rare diseases (2022)
This is the first multi-center study to investigate the effects of a mental health specialist working in tandem with a somatic expert physician in CRDs. If this innovative approach proves successful, it will be made available on a larger scale nationally and promoted internationally. In the best case, ZSE-DUO can significantly shorten the time to diagnosis for a suspected rare disease. Trial registration ClinicalTrials.gov; Identifier: NCT03563677; First posted: June 20, 2018, https://clinicaltrials.gov/ct2/show/NCT03563677 .