Symptoms and Treatment Results in Hereditary Hemorrhagic Telangiectasia

University Hospital Essen

Status: Completed

Conditions: Hereditary Haemorrhagic Telangiectasia (HHT)

Treatments: Other: questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT02690246

University Clinic Essen

Details and patient eligibility

About

Hereditary haemorrhagic telangiectasia (HHT), also known as Rendu-Osler-Weber syndrome, is an inherited multisystemic disorder with recurrent epistaxis, mucocutaneous telangiectasia and visceral arteriovenous malformations. The purpose of this study is to provide data about multiple clinical aspects of HHT and responses to treatment. For comparison of some aspects also data of non-affected relatives is collected (second cohort). the questionnaire has been designed primarily for web based entry, but can also be circulated in paper format on request.

Full description

Specific aspects include potential consequences from iron deficiency, efficacy and safety of self-packing, effect of female sex hormones, mortality, effects on the immune system.

Enrollment: 915 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• a diagnosis of Hereditary Haemorrhagic Telangiectasia

Exclusion criteria

• unable to provide informed consent

Trial design

915 participants in 2 patient groups

patients with HHT

Description:

patients with Hereditary Haemorrhagic Telangiectasia

Treatment:

Other: questionnaire

control cohort

Description:

indirectly only as a control cohort in questionnaire of affected persons