Endometriosis Self-Management Strategies
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Endometriosis, Self-management. Basic parameters: from 16 years · Female.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Netherlands
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Endometriosis Self-Management Strategies: Exploring Empowerment and Abandonment Through Lived Experiences
Overview
The goal of this observational study is to document the lived experiences of self-managing endometriosis in people living with endometriosis who live in Europe. The main question it aims to answer is: \[How\] do support structures across personal, community, healthcare, and institutional levels influence individuals' experiences of empowerment and abandonment in self-managing endometriosis? Participants will describe the everyday actions they take to live with endometriosis, through diary studies, interviews, and focus groups.
Detailed description
The goal of this observational study is to document the lived experiences of self-managing endometriosis in people living with endometriosis who live in Europe. The main question it aims to answer is: \[How\] do support structures across personal, community, healthcare, and institutional levels influence individuals' experiences of empowerment and abandonment in self-managing endometriosis?
Participants will describe the everyday actions they take to live with endometriosis, through diary studies, interviews, and focus groups.
Primary outcome measures
- Lived experiences self-managing endometriosis (Qualitative narratives through interviews and diary studies) [Time frame: From enrollment until the end of focus group participation, up to four years]
Eligibility criteria
Inclusion criteria
- living in a European country
- 16 years or older
- having been diagnosed with endometriosis or very likely to have endometriosis based on a previous assessment, even if not having received a definitive surgical diagnosis
- fluent in a language spoken by the research team
Exclusion criteria
- not meeting one of the inclusion criteria
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Ecologic or community
Study locations
Netherlands · 1 center
- Leeuwenborch — Wageningen
Identifiers
NCT: NCT07591441 · 2025-118-A2 · 101157146