Project background & objectives

Hereditary angioedema (HAE) is a genetic disorder characterized by transient, recurrent subcutaneous and/or submucosal edema. In France, around 1,500 people suffer from this condition. Management of hereditary angioedema requires regular follow-up by one of the 18 centers of reference for hereditary kinin angioedema (CREAK).

The HARPE (Hereditary Angioedema Registry and Patient Evaluation) project, led by Grenoble Alpes University Hospital as CREAK hospital coordinator, aims to create a single national registry dedicated to patients diagnosed with hereditary angioedema. The aim of this project is toincrease medical knowledge and improve the quality of care for patients suffering from this disease.

Institutional support has been provided by BioCryst France, a biotechnology laboratory specializing in rare diseases. Additional funding is being sought through calls for projects and from other manufacturers, with the support of Carely, a consulting firm specializing in innovative healthcare projects.

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1500

AOH PATIENTS IN FRANCE

+18

AOH REFERENCE CENTER IN FRANCE

VARIABLES

The patient's voice

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Participating centers

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Inclusion criteria & study variables

The HARPE project targets all patients diagnosed with hereditary angioedema (HAE). The registry is made up of numerous variables covering the following areas:

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Genre,
Date of birth,
vital status,

DATE OF DEATH,
Cause of death etc...

SMOKING STATUS,
cannabis consumption,
vital status

DIAGNOSIS DATE,
METASTATIC AT DIAGNOSIS,
TNM STATUS AT DIAGNOSIS,

HISTOLOGICAL SUBTYPE,
metastatic sites,
MUTATIONS etc...

TYPE OF TREATMENT,
drugs used,
BETTER RESPONSE TO TREATMENT,

PROGRESSION ETC...

Scientific Committee

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Key dates

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Posters & Publications

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Research projects

Here you will find all the study projects using the cohort. These projects comply with the regulatory framework and have been approved in advance by the cohort's scientific committee:

Patients

Why take part in the project?

Some of your medical and administrative data is collected when you are treated in a healthcare facility. This data is useful for the advancement of research.

This research, conducted in the public interest, aims to develop knowledge in order to develop new treatments or improve the overall management of patients suffering from the same disease as you. If you agree to your data being used for this study, you will not have to make any additional visits or undergo any additional examinations.

Only information already in your medical file will be collected. No directly identifying data (surname, first name or contact details) will be included in the cohorts.