Development of a Quality of Life Measurement Scale in Hereditary Haemorrhagic Telangiectasia (HHT) Disease.

CompletedOBSERVATIONAL
Enrollment

643

Participants

Timeline

Start Date

January 28, 2019

Primary Completion Date

December 28, 2020

Study Completion Date

December 28, 2020

Conditions
Hereditary Hemorrhagic Telangiectasia
Interventions
OTHER

Phase 1 : fill out 1 scale

"Patients will be asked to complete questionnaires.~Group 1: the purpose is to simplify a 75 items scale by a statistical analysis of the data collected from 400 patients. The statistical purification will allow to finalize an abbreviated scale (20-25 items).~Doctors specialized in Hereditary Haemorrhagic Telangiectasia may suggest that patients enter the study. After submission of the information notice and collection of their non-opposition, patients will have the choice to fill out the paper version or the electronic version of the scale and questionnaires."

OTHER

Phase 2 : fill out 1 scale and 4 questionnaires

"Patients will be asked to complete questionnaires.~Group 2: the purpose is to validate the abbreviated scale by a statistical analysis of the data collected from 200 patients. The statistical validation will allow to check the consistency and correlation of the abbreviated scale with other scales: a general Quality Of Life scale (SF36), an anxiety and depression scale (HAD), a social support scale (SSQ6) and a scale of regulation emotional (CERQ) and to test and re-test to check fidelity of the abbreviated scale.~Doctors specialized in Hereditary Haemorrhagic Telangiectasia may suggest that patients enter the study. After submission of the information notice and collection of their non-opposition, patients will have the choice to fill out the paper version or the electronic version of the scale and questionnaires."

Trial Locations (1)

69677

Centre de Référence pour la Maladie de Rendu-Osler - Service de Génétique Clinique - HOSPICES CIVILS DE LYON - Groupement Hospitalier Est, Bron

All Listed Sponsors
lead

Hospices Civils de Lyon

OTHER

NCT03695874 - Development of a Quality of Life Measurement Scale in Hereditary Haemorrhagic Telangiectasia (HHT) Disease. | Biotech Hunter | Biotech Hunter