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HOSFOS



Short title: HOSFOS Registry

Investigated disease: Morbus Fabry

Principal Investigator: Dr. Sima Canaan-Kühl


Clinic, Institute: Medizinische Klinik m.S. Nephrologie und Internistische Intensivmedizin CCM

Patient (diseased)
Age: 18 - 99
Gender: All

Status: Participants wanted
Last change: 04.02.2023

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Study Description

Title

HOSFOS

Short title

HOSFOS Registry

General Short Description

A global, multinational, non-interventional, drug registry with longitudinal data collection

Scientific Short Description

A global, multinational, non-interventional, drug registry with longitudinal data collection

Study start

16.09.2020

Investigated Disease, Health Issue

ICD-Code
  • E75.2 - Sonstige Sphingolipidosen

Inclusion Criteria

Age

18 - 99

Gender

All

Additional Inclusion Criteria

Fabry disease Population
Each patient must meet the following criteria to be enrolled in this registry:
1. Patients with a documented diagnosis of Fabry disease, which may include a genetic mutation analysis.
2. Patients who are untreated, currently treated with Replagal, or previously treated with any enzyme replacement therapy (ERT).
3. Signed and dated written informed consent from the patient or, for patients aged <18 years (or as per local regulation), parent and/or patient's legally authorized representative (LAR), and assent of the minor where applicable. If a patient is unable to read or if a legally acceptable representative is unable to read, an impartial witness should be present during the informed consent discussion and should sign and personally date the informed consent.

Exclusion Criteria

Patients who meet any of the following criteria will be excluded from the Registry.
1. Patients who are receiving treatment with an ERT for Fabry disease other than Replagal.
2. Patients enrolled in a clinical study (except a Replagal open-label clinical study), are not eligible until they have completed or withdrawn from the clinical study.

Characteristics

Studytype

Non-interventional

Studyphase

N/A

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