Last reviewed · How we verify
NCT07191639: DISQUO
Description of the Impact of Symptoms on Quality of Life in HHT Disease: DISQUO
trial testing completion of the QOL-HHT questionnaire in Hereditary Hemorrhagic Telangiectasia (HHT) in 185 participants. Completed in 1 May 2025.
1 December 2024
Quick facts
| Lead sponsor | Hospices Civils de Lyon |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 185 |
| Start date | 1 December 2024 |
| Primary completion | 1 December 2024 |
| Estimated completion | 1 May 2025 |
| Sites | 1 location across France |
Drugs / interventions tested
- completion of the QOL-HHT questionnaire
Conditions studied
- Hereditary Hemorrhagic Telangiectasia (HHT) — all drugs for Hereditary Hemorrhagic Telangiectasia (HHT) →
Sponsor
Hospices Civils de Lyon — full company profile →
Who can join
18 and older, any sex, with Hereditary Hemorrhagic Telangiectasia (HHT). Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
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.
Publications & conference data
No peer-reviewed publications indexed yet for this trial. Completed trials usually publish results within 12-18 months.
Verify or expand the search:
- PubMed search for NCT07191639
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other recruiting trials for Hereditary Hemorrhagic Telangiectasia (HHT)
Currently open trials in the same condition.
- NCT07018401 — Pomalidomide for the Treatment of Bleeding in Hereditary Hemorrhagic Telangiectasia Longitudinal Assessment Study · active not recruiting
Other Hospices Civils de Lyon trials
Trials by the same sponsor.
- NCT07569536 — Efficacy of the Alpha 2 Agonist Dexmedetomidine for Sympathetic Deactivation in REfractory Septic Shock · Phase 3 · not yet recruiting
- NCT07529314 — Evaluating Interventional Radiology for Cancer Pain Management · NA · not yet recruiting
- NCT07273929 — Comparative Study of the Effectiveness of Three Access Routes for Implanting an Electronic Intracardiac Device · Phase 3 · not yet recruiting
- NCT07474532 — Attitudes and Beliefs Related to Benzodiazepine Deprescribing · not yet recruiting
- NCT07313007 — Assessment of Gut Microbiota-Derived Amino Acid Metabolite Production in Patients With MASLD · NA · not yet recruiting
Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT07191639 (US National Library of Medicine, public domain)
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by Hospices Civils de Lyon
- Last refreshed: 25 September 2025
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT07191639.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing