Egyptian Hypertrophic Cardiomyopathy Program
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Hypertrophic Cardiomyopathy. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Egypt
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
Egyptian HCM program aims at defining incidence, severity, phenotype, genotype and determinants of the disease in Egypt, and providing state-of-the-art treatment strategies including medical, surgical and interventional procedures which are patient- and disease-specific.
Detailed description
This project aims to:
* Define incidence, severity, phenotype, genotype and determinants of the disease in Egypt. * Characterise the phenotype and genotype of several large cohorts with inherited muscle disease and their relatives. * Provide state-of-the-art treatment strategies including medical, surgical and interventional procedures which are patient- and disease-specific. * Study the basic mechanisms responsible for the different phenotypes at a molecular and cellular level including genotype-phenotype correlation. * Provide a special focus for studying patients who are genotype positive and phenotype negative which we believe could yield critical data regarding the evolution of the disease. * Develop sophisticated laboratory studies for single cell electrophysiology and immunocytochemistry and others focusing on the explanted human material from the surgical program. * Define the role of microvascular coronary artery in the development and progression of the disease. * Training Egyptian cardiologists, cardiac surgeons and scientists on state-of-the-art diagnosis and management of heart muscle disease including the latest developments in imaging, novel surgical techniques, coronary physiology, next generation sequencing, bioinformatics and cellular electrophysiology.
Primary outcome measures
- Incidence of HCM in Egypt [Time frame: through study completion, an average of 5 year]
- Determinants of clinical severity of HCM in Egypt [Time frame: through study completion, an average of 1 follow-up every year, and an average of 5 follow-ups throughout the study duration]
- Determinants of cardiac phenotype severity of HCM in Egypt [Time frame: through study completion, an average of 1 follow-up every year, and an average of 5 follow-ups throughout the study duration]
- Determinant of genotype severity of HCM in Egypt [Time frame: through study completion, at least once at the time of inclusion]
- Study the basic mechanisms responsible for the HCM in Egypt [Time frame: through study completion, at least once at the time of inclusion, or]
Eligibility criteria
Inclusion criteria
- All patients diagnosed with hypertrophic cardiomyopathy (index patients) who are willing and consented to participate in the registry.
- All family members of index patients who are willing and consented to participate in the registry.
Exclusion criteria
- Refusal to consent to participate in the registry program.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Cohort
Study locations
Egypt · 1 center
- Aswan Heart Centre - Magdi Yacoub Heart Foundation — Aswān
Identifiers
NCT: NCT05884892 · AHC-HCM