GSD/GLA registry Freiburg - Register for Gorham-Stout-Disease (GSD) and generalised lymphatic anomalies (GLA) -

GSD/GLA registry Freiburg - Register for Gorham-Stout-Disease (GSD) and generalised lymphatic anomalies (GLA) - - GSD/GLA-Registry

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00007182

Enrollment

Registered

2015-06-17

Start date

2014-09-18

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

Gorham-Stout-Disease (GSD) Generalized Lymphatic Anomalies (GLA) M89.5 I89 D18.1

Interventions

Group 1: The aim of the register is the systematic and central registration of the illness course of patients with Gorham-Stout-Disease and generalised lymphatic anomalies. By the collection of this i

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: All patients with Gorham-Stout-Disease/the generalised lymphatic anomalies which have given their written consent are enclosed.

Exclusion criteria

Exclusion criteria: The patients with missing, or secluded consent are excluded to the participation in the register.

Design outcomes

Primary

Measure	Time frame
The aim of the registry is the systematic and central registration of the illness course of the patients with Gorham-Stout-Disease (GSD) and generalised lymphatic anomalies (GLA) with the help of a registration curve.	—

Secondary

Measure	Time frame
By the accumulated information and scientific evaluation it is possible to get to know the diseases better and to optimise in the longer term the strategies of treatment according to the actual level of knowledge. Besides the care of the affected patients and the consultation of the treating doctors can be improved thus. It may also answer scientific questions, as for example the aetiology of the diseases.	—

Measure

Time frame

By the accumulated information and scientific evaluation it is possible to get to know the diseases better and to optimise in the longer term the strategies of treatment according to the actual level of knowledge. Besides the care of the affected patients and the consultation of the treating doctors can be improved thus. It may also answer scientific questions, as for example the aetiology of the diseases.

—

Countries

Austria, Germany, Switzerland

Contacts

Public ContactFriedrich Kapp

Universitätsklinikum Freiburg, Zentrum für Kinder- und Jugendmedizin

friedrich.kapp@uniklinik-freiburg.de+49 761 270 46211

Outcome results

None listed

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