Symptoms and Treatment Results in Hereditary Hemorrhagic Telangiectasia

U

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

Trial contacts and locations

1

Loading...

Data sourced from clinicaltrials.gov

Clinical trials

Find clinical trialsTrials by location
© Copyright 2024 Veeva Systems