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Symptoms and Treatment Results in Hereditary Hemorrhagic Telangiectasia

NCT ID: NCT02690246

Last Updated: 2022-03-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

915 participants

Study Classification

OBSERVATIONAL

Study Start Date

2014-04-30

Study Completion Date

2021-03-31

Brief Summary

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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.

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Detailed Description

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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.

Conditions

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Hereditary Haemorrhagic Telangiectasia (HHT)

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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patients with HHT

patients with Hereditary Haemorrhagic Telangiectasia

questionnaire

Intervention Type OTHER

a questionnaire based study

control cohort

indirectly only as a control cohort in questionnaire of affected persons

No interventions assigned to this group

Interventions

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questionnaire

a questionnaire based study

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* a diagnosis of Hereditary Haemorrhagic Telangiectasia

Exclusion Criteria

* unable to provide informed consent
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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University Hospital, Essen

OTHER

Sponsor Role lead

Responsible Party

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Urban Geisthoff

Prof. Dr. med.

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Urban Geisthoff, Prof. Dr.

Role: STUDY_DIRECTOR

University Hospital, Essen

Locations

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University Hospital Essen

Essen, , Germany

Site Status

Countries

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Germany

Other Identifiers

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University Clinic Essen

Identifier Type: -

Identifier Source: org_study_id

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