Hereditary Hemorrhagic Telangiectasia (HHT)DISQUONCT07191639
Description of the Impact of Symptoms on Quality of Life in HHT Disease: DISQUO
An observational study of Hereditary Hemorrhagic Telangiectasia (HHT), run by Hospices Civils de Lyon at 1 site in France.
Trial summary
In 2017, the ELECT-RO study led, firstly, to the creation of a tool to measure quality of life (QoL) specific to HHT (hereditary haemorrhagic telangiectasia disease), QoL-HHT, based on patients' experiences, their representations and their difficulties. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Hereditary Hemorrhagic Telangiectasia (HHT)
- What is being tested?
- completion of the QOL-HHT questionnaire
- How many people
- 185 participants
- Where
- 1 siteFrance
- Study dates
- 1 Dec 2024to 1 May 2025
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: * Population: Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease * Patient of legal age (over 18 years old) * Patient who has received the information and has not objected to taking part in the study
Who may be able to join
- Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease
- Patient of legal age (over 18 years old)
- Patient who has received the information and has not objected to taking part in the study
Who cannot join
- Patients unable to read a questionnaire written in French
- Adults protected by law
Trial locations and contacts
1 site in 1 country.
France1 site
Hôpital Femme-Mère-Enfant - Centre de référence pour la maladie de Rendu-Osler
Bron, 69500
About this study
In 2017, the ELECT-RO study led, firstly, to the creation of a tool to measure quality of life (QoL) specific to HHT (hereditary haemorrhagic telangiectasia disease), QoL-HHT, based on patients' experiences, their representations and their difficulties. Secondly, the ELECT-RO study demonstrated the validity of the measurement scale, meaning that QoL-HHT does indeed measure patients' QoL and is therefore a reference tool.
QoL-HHT gives investigators a good understanding of the different aspects of patients' QoL (physical limitations, concerns about bleeding, concerns about the evolution of the disease, social relationships, relationships with healthcare professionals and the experience of the disease), whether they are affected or not, at an individual level.
Read more
Today, investigators believe it is important to take a more global (population-based) view of the aspects of quality of life affected by HHT. While studies have shown the importance of the role of epistaxis (frequency, duration, intensity, experience) in QoL, what about other symptoms and clinical signs?
The DISQUO study, which the researchers plan to start today, is a follow-up to ELECT-RO. It should enable the researchers to gain a better understanding of the QoL of people with HHT and the impact of each symptom of HHT on patients' QoL.
The DISQUO study will therefore allow the investigators to gain a better understanding of the impact of HHT symptoms on the different areas of patients' QoL.
- Being tested
- completion of the QOL-HHT questionnaire
- Keywords
- Quality of life, HHT
- Medical subject headings
- Telangiectasia, Hereditary Hemorrhagic
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
completion of the QOL-HHT questionnaireOther
filling in the QOL-HHT questionnaire when they come for consultation
| Study group | Role | What they receive |
|---|---|---|
| HHT patients | completion of the QoL-HHT questionnaire during a consultation at the reference centre Receives: Other: completion of the QOL-HHT questionnaire |
What is being measured
The primary outcome is the main question the study is designed to answer.
Description of the quality of life assessed by QOL-HHT scale of HHT patients
the different scores measured by the QOL-HHT scale
Measured: Baseline
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted25 Sep 2025
- Study start1 Dec 2024
- Primary completion1 Dec 2024
- Study completion1 May 2025
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Hereditary Hemorrhagic Telangiectasia (HHT)Studies of the same condition, open and under way.
- More trials run by Hospices Civils de LyonThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Retrospective
- Enrolment
- 185 participants (actual)
Sponsor and investigators
- Lead sponsor
- Hospices Civils de Lyon
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07191639
- Sponsor's protocol ID
- 24-5147
- Acronym
- DISQUO
- Status last verified
- Sep 2025
- First submitted
- 13 Aug 2025
- Last updated
- 25 Sep 2025
- Results posted
- No
Study at a glance
From the registry record, last updated by the sponsor on 25 Sep 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Description of the Impact of Symptoms on Quality of Life in HHT Disease: DISQUO
- ClinicalTrials.gov ID
- NCT07191639
- Acronym / sponsor ID
- DISQUO / 24-5147
- Keywords
- Quality of life, HHT
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 185 participants (actual)
- Lead sponsor
- Hospices Civils de LyonUniversity, hospital or other
- Study start
- 1 Dec 2024 (actual)
- Primary completion
- 1 Dec 2024 (actual)
- Study completion
- 1 May 2025 (actual)
- First posted
- 25 Sep 2025 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
In 2017, the ELECT-RO study led, firstly, to the creation of a tool to measure quality of life (QoL) specific to HHT (hereditary haemorrhagic telangiectasia disease), QoL-HHT, based on patients' experiences, their representations and their difficulties. Secondly, the ELECT-RO study demonstrated the validity of the measurement scale, meaning that QoL-HHT does indeed measure patients' QoL and is therefore a reference tool.
QoL-HHT gives investigators a good understanding of the different aspects of patients' QoL (physical limitations, concerns about bleeding, concerns about the evolution of the disease, social relationships, relationships with healthcare professionals and the experience of the disease), whether they are affected or not, at an individual level.
Today, investigators believe it is important to take a more global (population-based) view of the aspects of quality of life affected by HHT. While studies have shown the importance of the role of epistaxis (frequency, duration, intensity, experience) in QoL, what about other symptoms and clinical signs?
The DISQUO study, which the researchers plan to start today, is a follow-up to ELECT-RO. It should enable the researchers to gain a better understanding of the QoL of people with HHT and the impact of each symptom of HHT on patients' QoL.
The DISQUO study will therefore allow the investigators to gain a better understanding of the impact of HHT symptoms on the different areas of patients' QoL.
Study design
- Observational model
- Cohort
- Time perspective
- Retrospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| HHT patients | – | Other: completion of the QOL-HHT questionnairecompletion of the QoL-HHT questionnaire during a consultation at the reference centre |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- * Population: Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease * Patient of legal age (over 18 years old) * Patient who has received the information and has not objected to taking part in the study
Key inclusion criteria (3 listed)
- Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease
- Patient of legal age (over 18 years old)
- Patient who has received the information and has not objected to taking part in the study
Key exclusion criteria (2 listed)
- Patients unable to read a questionnaire written in French
- Adults protected by law
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| completion of the QOL-HHT questionnairefilling in the QOL-HHT questionnaire when they come for consultation | Other | HHT patients |
Primary outcome
Description of the quality of life assessed by QOL-HHT scale of HHT patients
Time frame: Baseline
the different scores measured by the QOL-HHT scale
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 25 Sep 2025.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Hereditary Hemorrhagic Telangiectasia (HHT), run by Hospices Civils de Lyon at 1 site in France.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 25 Sep 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in France. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Description of the quality of life assessed by QOL-HHT scale of HHT patients (time frame: Baseline). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 25 Sep 2025.