Central Information Portal for rare diseases - Sub-project 2: Information Request from patients and their families.

Central Information Portal for rare diseases - Sub-project 2: Information Request from patients and their families. - ZIPSE

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00006011

Enrollment

Registered

2014-04-10

Start date

2014-03-19

Completion date

Unknown

Last updated

2025-04-07

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

Conditions

Rare diseases.

Interventions

Group 1: Patients and their families will be recruited by the Center of Rare Diseases in Freiburg (ZSE) and other university centers of Rare Diseases. After patient consent, qualified interviews will

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: Patients and/or their families with a rare disease.

Exclusion criteria

Exclusion criteria: No rare disease.

Design outcomes

Primary

Measure	Time frame
Determination of information needs and creation of ideal-typical information channels.	—

Countries

Germany

Contacts

Public ContactD. Kirstein

Universitätsklinikum Freiburg - Zentrum für Seltene Erkrankungen - Klinik für Dermatologie und Venerologie

daniela.kirstein@uniklinik-freiburg.de+49 761 270 66140

Outcome results

None listed

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