Assessment of the State of Health, Quality of Life and Expectations of Patients With Hereditary Angioedema

NCT ID: NCT04888650

Last Updated: 2023-05-10

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

314 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-05-03

Study Completion Date

2022-01-02

Brief Summary

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8 years after the establishment of the therapeutic education program and 14 years after the creation of the National Reference Center for Angioedemas (CREAK), it is necessary to make an inventory in 2021 on the disease experienced by the patient with an assessment the needs and expectations of HAE patients. This assessment would make it possible to see the evolution of these needs and to adjust the price for the overall cost of children and adults in France. It may also allow a comparison of the requests expressed during a similar survey in another French-speaking region such as Quebec.

Main objective is to know the needs and the current satisfaction of the needs, with regard to the disease and the treatment of the targeted patients of hereditary angioedema (HAE)

Detailed Description

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Conditions

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Hereditary Angioedema

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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angiodema hereditary patients

Patient with HAE with or without C1 inhibitor deficiency will respond to an electronic questionnaire

questionnaire

Intervention Type OTHER

electronic questionnaire

Interventions

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questionnaire

electronic questionnaire

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Patient with HAE with or without C1 inhibitor deficiency
* Patient over 15 or parents of a child under 15 with HAE

Exclusion Criteria

* Patient opposed to the use of their data or refusing to answer the questionnaire
* Adult patients protected by law
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University Hospital, Grenoble

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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CHUGA

Grenoble, , France

Site Status

Countries

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France

Other Identifiers

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38RC21.054

Identifier Type: -

Identifier Source: org_study_id

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