Understanding growth in patients with epidermolysis bullosa.

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00013002

Enrollment

700

Registered

2018-02-01

Start date

2017-05-01

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

Q81.2 Q81.8

Interventions

Group 1: This is a mainly retrospective analysis of height- and weight measurements in patients with both dystrophic and junctional epidermolysis bullosa (EB). These measures are usually obtained on p

Eligibility

Sex/Gender

All

Age

0 Years to No maximum

Inclusion criteria

Inclusion criteria: - Molecular diagnosis of epidermolysis bullosa - At least one clinical presentation to the Epidermolysis bullosa center Freiburg Data on height and weight measurements are gathered from patient files of the years 2002 to now for retrospective analysis. Prospective data collection takes place as of ethic consent in 04/2017 and will continue until the summer of 2018.

Exclusion criteria

Exclusion criteria: - No molecular diagnosis of epidermolysis bullosa - No clinical presentation to the Epidermolysis bullosa center Freiburg

Design outcomes

Primary

Measure	Time frame
Retrospective analysis of data from patient files: -Weight in kg as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated scales -Height in cm as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated measure The primary outcome is the existence of failure to thrive (i.e. weight and height below 3. percentile of WHO-growth curves).	—

Measure

Time frame

Retrospective analysis of data from patient files: -Weight in kg as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated scales -Height in cm as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated measure The primary outcome is the existence of failure to thrive (i.e. weight and height below 3. percentile of WHO-growth curves).

—

Secondary

Measure	Time frame
Retrospective analysis of data from patient files: - Weight in kg as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated scales - Height in cm as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated measure Secondary outcomes are the existence of - Underweight (i.e. weight below 3. percentile of WHO-growth curves) - Short stature (i.e. height below 3. percentile of WHO-growth curves)	—

Measure

Time frame

Retrospective analysis of data from patient files: - Weight in kg as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated scales - Height in cm as measured on clinical presentation to the Epidermolysis bullosa center Freiburg with calibrated measure Secondary outcomes are the existence of - Underweight (i.e. weight below 3. percentile of WHO-growth curves) - Short stature (i.e. height below 3. percentile of WHO-growth curves)

—

Countries

Germany

Contacts

Public ContactAntonia Reimer

Epidermolysis bullosa-Zentrum Freiburg, Klinik für Dermatologie und Venerologie, Universitätsklinikum Freiburg

antonia.reimer@uniklinik-freiburg.de+49 761 270 67010

Outcome results

None listed

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