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| ID | Type | Description | Link |
|---|---|---|---|
| 101157146 | Other Grant/Funding Number | Horizon Europe |
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| Name | Class |
|---|---|
| University of Edinburgh | OTHER |
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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| People living with endometriosis across Europe | Qualitative data collection- no intervention of interest |
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| Measure | Description | Time Frame |
|---|---|---|
| Lived experiences self-managing endometriosis (Qualitative narratives through interviews and diary studies) | People will discuss their lived experiences self-managing endometriosis, discussing what everyday actions they do to feel their best (qualitative narratives, lived experiences collected through interviews and diary studies) | From enrollment until the end of focus group participation, up to four years |
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Inclusion Criteria:
Exclusion Criteria:
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People living with endometriosis who are above 16 years of age and residing in Europe; family/friends/partners of people living with endometriosis. Also, healthcare providers and policymakers.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Erica I Selznick, MSPH | Contact | +32471854659 | erica.selznick@wur.nl |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Leeuwenborch | Recruiting | Wageningen | 6706 KN | Netherlands |
The data will be personal, sensitive data about lived experiences and therefore will only be available to the research team and not shared.
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| ICF | No | No | Yes | Informed Consent Form | Sep 4, 2025 | May 6, 2026 | ICF_000.pdf |
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| ID | Term |
|---|---|
| D004715 | Endometriosis |
| ID | Term |
|---|---|
| D005831 | Genital Diseases, Female |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
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| D000091662 | Genital Diseases |