NCT07560956Enrolling by invitation
Quality of Life in Adults With Untreated Fabry Disease in Sweden (QoLUF)
Quality of Life in Patients With Untreated Fabry Disease: A National Descriptive Study
Source: ClinicalTrials.gov · Last updated 27 Aug 2026
Brief summary (registry, in English)
Fabry disease is a rare, inherited condition that can affect multiple organs, including the heart, kidneys, and nervous system. Many people with Fabry disease live for a period of time without receiving disease-specific treatment, for example because treatment criteria have not yet been met. There is limited knowledge about how patients experience this period without treatment. The purpose of this study is to improve understanding of how adults with Fabry disease who are not yet receiving disease-specific treatment experience their quality of life, their daily lives, and their contacts with health care services. This is a national interview study in which participants will take part in one individual digital interview lasting approximately 45-60 minutes. During the interview, participants will be invited to describe their experiences in their own words, including symptoms, how the disease affects everyday life, psychological and emotional well-being, and experiences of follow-up and support from health care providers. Participants will also complete a short questionnaire with basic background information, such as age, education, and living situation. By collecting and analyzing patients' own narratives, the study aims to identify needs, challenges, and support resources during the period without treatment. The results are expected to contribute to increased knowledge and to the development of more person-centered care for individuals living with Fabry disease.
- Status (registry)
- Enrolling by invitation
- Study type
- Observational
- Enrollment
- 35 (estimated)
- First submitted
- 24 Apr 2026
- Start date
- 21 Aug 2026
- Primary completion date
- 31 Dec 2027
- Lead sponsor
- Vastra Gotaland Region
- Diseases
- Fabry disease
- NCT number
- NCT07560956
What you commit to
- Study type: Observational
- Planned participants: 35
- From 21 Aug 2026 to the primary completion date, 31 Dec 2027
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Current or planned disease-specific treatment for Fabry disease
- Disease-specific treatment deemed permanently not indicated due to other medical conditions
- Actively declined an offered disease-specific treatment
Other
- Inability to participate in a qualitative interview
Who the study is looking for
- Age 18 years or older
- Confirmed diagnosis of Fabry disease
- Followed at a National Highly Specialized Care (NHV) center for Fabry disease in Sweden (Sahlgrenska University Hospital or Karolinska University Hospital)
- Not currently receiving disease-specific treatment for Fabry disease (such as enzyme replacement therapy or chaperone therapy)
- Treatment may be considered in the future
- Ability to understand and speak Swedish
- Ability and willingness to provide written informed consent
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Sahlgrenska University Hospital Coordinator of this site? Confirm its status | Gothenburg | Sweden | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.