Egyptian Hypertrophic Cardiomyopathy Program
Ориентир для пациента и семьи
Простыми словами
Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.
- Что изучают
- Это наблюдательное исследование: исследуемое лечение участникам по протоколу не назначают.
- Кому может быть актуально
- Состояния в реестре: Hypertrophic Cardiomyopathy. Базовые параметры: Без ограничений · Все.
- Что важно проверить
- Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
- Где проводится
- Египет
- Следующий шаг
- Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →
Не всё понятно в терминах? Прочитайте наш гид для пациентов →
Обзор
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.
Подробное описание
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.
Первичные конечные точки
- Incidence of HCM in Egypt [Срок оценки: through study completion, an average of 5 year]
- Determinants of clinical severity of HCM in Egypt [Срок оценки: 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 [Срок оценки: 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 [Срок оценки: through study completion, at least once at the time of inclusion]
- Study the basic mechanisms responsible for the HCM in Egypt [Срок оценки: through study completion, at least once at the time of inclusion, or]
Критерии участия
Критерии включения
- 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.
Критерии исключения
- Refusal to consent to participate in the registry program.
Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.
Здоровые добровольцы: Да
Дизайн исследования
- Модель наблюдения
- Когортное
Центры проведения
Египет · 1 центр
- Aswan Heart Centre - Magdi Yacoub Heart Foundation — Aswān
Идентификаторы
NCT: NCT05884892 · AHC-HCM