Erythropoietic protoporphyria life impact and genetic health trajectory (EPP LIGHT): a survey of adults and adolescents in Europe living with EPP

EPP LIGHT (Life Impact and Genetic Health Trajectory) study: A cross-sectional online survey of adult and adolescent participants with erythropoietic protoporphyria (EPP) in Europe

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ISRCTN

Registry ID

ISRCTN85286742

Enrollment

100

Registered

2026-03-17

Start date

2025-08-01

Completion date

Unknown

Last updated

2026-03-30

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

Conditions

Erythropoietic protoporphyria and X-linked protoporphyria (collectively referred to as EPP) Nutritional, Metabolic, Endocrine

Interventions

The research consists of an online survey study for which participants will be required to complete a one-off questionnaire. Participants will be identified with via the relevant Patient Advocacy Grou

Eligibility

Sex/Gender

All

Age

12 Years to 120 Years

Inclusion criteria

Inclusion criteria: Confirmed diagnosis of erythropoietic protoporphyria and X-linked protoporphyria

Exclusion criteria

Exclusion criteria: A cognitive or other (visual, hearing) impairment that would interfere with the ability to participate in the study.

Countries

England, France, Germany, Italy, Northern Ireland, Scotland, Spain, United Kingdom, Wales

Contacts

Public ContactMathieu Loiseau

mathieu.loiseau@sciensus.com+44 7736618069

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Apr 4, 2026