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NCT03695874: ELECT-RO
Development of a Quality of Life Measurement Scale in Hereditary Haemorrhagic Telangiectasia (HHT) Disease.
trial testing Phase 1 : fill out 1 scale in Hereditary Hemorrhagic Telangiectasia in 643 participants. Completed in 28 December 2020.
28 December 2020
Quick facts
| Lead sponsor | Hospices Civils de Lyon |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 643 |
| Start date | 28 January 2019 |
| Primary completion | 28 December 2020 |
| Estimated completion | 28 December 2020 |
| Sites | 1 location across France |
Drugs / interventions tested
- Phase 1 : fill out 1 scale
- Phase 2 : fill out 1 scale and 4 questionnaires
Conditions studied
- Hereditary Hemorrhagic Telangiectasia — all drugs for Hereditary Hemorrhagic Telangiectasia →
Sponsor
Hospices Civils de Lyon — full company profile →
Who can join
18 and older, any sex, with Hereditary Hemorrhagic Telangiectasia. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
Hereditary Haemorrhagic Telangiectasia (HHT) is a rare inherited genetic disease of autosomal dominant inheritance with a prevalence of 1/6000. It is manifested by haemorrhages, mucocutaneous telangiectasias and visceral arteriovenous malformations. These symptoms significantly affect the daily lives of patients, their social relationships and their working lives. HAS (Haute Autorité de Santé) national recommendations focus on assessing and improving the quality of life (QOL) of patients. Many scales for measuring QOL exist but they are most often general and therefore have the disadvantage of not taking into account the particularities of pathologies and their symptoms and do not allow to have a precise vision of their impact on QOL. It is important to be able to evaluate this impact, to determine its nature and to quantify it so that health professional can adapt their proposal for the management of HHT patients. And only the development of a specific and validated QOL measurement scale will allow them to access this information. The aim of this study is to develop a scale of measurement of quality of life in HHT disease and to validate it, a scale specific to HHT, simple and fast to fill by the patients themselves.
Publications & conference data
2 peer-reviewed publications reference this trial (live from Europe PMC):
-
Development and validation of a quality of life measurement scale specific to hereditary hemorrhagic telangiectasia: the QoL-HHT.
Le TTT, Martinent G, Dupuis-Girod S, Parrot A, et al · · 2022 · cited 10× · PMID 35854330 · DOI 10.1186/s13023-022-02426-2 -
Development and validation of a quality of life measurement scale specific to Hereditary Hemorrhagic Telangiectasia: The QoL-HHT
LE TTT, MARTINENT G, DUPUIS-GIROD S, PARROT A, et al · · 2022 · DOI 10.21203/rs.3.rs-1419646/v1
Verify or expand the search:
- PubMed search for NCT03695874
- 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
Currently open trials in the same condition.
- NCT06659640 — A Study to Evaluate ALN-6400 in Healthy Volunteers and Patients With Hereditary Hemorrhagic Telangiectasia (HHT) · Phase 1, PHASE2 · recruiting
- NCT04874558 — Ultra-low-dose Chest CT for HHT · active not recruiting
- NCT04404881 — Bevacizumab In Hereditary Hemorrhagic Telangiectasia · Phase 2 · active not recruiting
- NCT04469517 — Influence of Hypoxic Induced Factors in Patients With Hereditary Hemorrhagic Telangiectasia · recruiting
- NCT04150822 — CHORUS - Comprehensive HHT Outcomes Registry of the United States (Formerly OUR HHT Registry) · active not recruiting
Other Hospices Civils de Lyon trials
Trials by the same sponsor.
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- 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 NCT03695874 (US National Library of Medicine, public domain)
- Publications: Europe PMC API search by NCT ID, retrieved 10 June 2026
- 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: 8 February 2021
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/NCT03695874.
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