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Table 2 Study endpoints

From: 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

Primary endpoint

Proportion of patients with one or more confirmed diagnoses covering the symptomatic spectrum presented

Secondary endpoints

a) Time to diagnosis/diagnoses explaining the symptomatology of the patient

b) Proportion of patients successfully referred from CRD to standard care

c) Costs of diagnosis including incremental cost effectiveness ratios

d) Identification of patients suffering from mental disorders by screening questionnaires

e) Patients’ quality of life and evaluation of care (i.e., satisfaction with the process of diagnosis and treatment)

f) Physicians’ satisfaction with the innovative care