ITMO public health
Last update : 07/08/2015 | Version : 1 | ID : 8665
| General | |
| Identification | |
| Detailed name | Longitudinal Study on Patients with Hypertrophic Cardiomyopathy |
| Sign or acronym | REMY: Clinical Research on Hypertrophic Cardiomyopathy |
| General Aspects | |
| Medical area |
Cardiology |
| Health determinants |
Genetic |
| Keywords | patient treatment, HCM, family, profile, diagnosis, assessment, therapy |
| Scientific investigator(s) (Contact) | |
| Name of the director | Hagège |
| Surname | Albert |
| Address | 20 Rue Leblanc 75908 PARIS CEDEX 15 FRANCE |
| Phone | +33 (0)1 56 09 36 83 |
| albert.hagege@egp.aphp.fr | |
| Unit | CHU Paris Ouest - Hôpital Européen Georges Pompidou |
| Organization | Hôpital Européen Georges |
| Collaborations | |
| Funding | |
| Funding status |
Private |
| Details | French Cardiology Society. |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | French Cardiology Society. |
| Organisation status |
Private |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Longitudinal study (except cohorts) |
| Database recruitment is carried out by an intermediary |
A selection of health institutions and services |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | 26 centres on 20/06/2014. |
| Database objective | |
| Main objective | To establish an observatory for the treatment of patients with hypertrophic cardiomyopathy (sarcomeric or non-sarcomeric). To specify the profile of HCM patients in France, methods for diagnosis and assessment (etiological and family survey), and therapeutic procedures. |
| Inclusion criteria |
- Aged 15 years or over;
- with HCM (non-valvular) defined by ultrasound with left ventricle thickness greater or equal to 13 mm (familial) or greater or equal to 15 mm (sporadic); - Patient was informed and gave their consent. Exclusion criteria: - Under 15 years old; - Significant aortic stenosis (less than 1 cm²). |
| Population type | |
| Age |
Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) Elderly (65 to 79 years) Great age (80 years and more) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | France |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 01/2010 |
| Date of last collection (YYYY or MM/YYYY) | 2020 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1,007 (20/06/2014). |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Declarative data Paraclinical data Biological data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Details of collected clinical data | HCM etiology, Doppler ultrasound, history of hospitalisation, treatment, complications. |
| Declarative data (detail) |
Paper self-questionnaire |
| Details of collected declarative data | Personal and family history, treatments. |
| Paraclinical data (detail) | ECG, MRI, scan, electrophysiological examination, cardiac catheterisation, biopsy. |
| Biological data (detail) | BNP, NT-Pro BNP, troponin, CPK, creatinine, haemoglobin, high-sensitivity CRP, iron level, TSH, serum calcium, serum protein electrophoresis, α-galactosidase A assay. |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality Health care consumption and services |
| Care consumption (detail) |
Hospitalization Medical/paramedical consultation Medicines consumption |
| Procedures | |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Follow-up at 18 months, 3 years and 5 years. |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Contact the scientist in charge. |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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