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German Register for Rare Diseases (DeRSE)- Database for patients with rare and unclear diseases

German Register for Rare Diseases (DeRSE)- Database for patients with rare and unclear diseases

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00035043
Enrollment
300
Registered
2025-04-07
Start date
2025-01-01
Completion date
Unknown
Last updated
2025-10-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Patients with unclear disease and suspected rare disease

Interventions

Group 1: Patients with unclear disease and suspected rare disease. It is planned to enter personal details and medical data (e.g. age and gender, height and weight, previous illnesses, course of the i

Sponsors

Universitätsklinikum Hamburg-Eppendorf
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: All patients who have undergone the standardized procedure of the Department for Rare Diseases and have given their consent are to be included. Adults, children and adolescents living in Germany will be considered. Requests from abroad are not included in the database.

Exclusion criteria

Exclusion criteria: Requests from abroad are not included in the database.

Design outcomes

Primary

MeasureTime frame
The aim of the project is to prospectively collect the clinical data of participating patients with unclear disease and suspected rare disease in a structured form so that they are then available in pseudonymized form for specific questions.

Secondary

MeasureTime frame
The aim of the project is to prospectively collect the clinical data of participating patients with unclear disease and suspected rare disease in a structured form so that they are then available in pseudonymized form for specific questions.

Countries

Germany

Contacts

Public ContactChristoph Schramm

Universitätsklinikum Hamburg-Eppendorf

mzcse-patienten@uke.de+49 40/ 7410 20940

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026