SAGHE - Adult Health Childhood GH

Head :
Carel Jean-Claude, CENTRE DE REFERENCE MALADIES ENDOCRINIENNES RARES DE LA CROISSANCE MINISTERE DE LA SANTÉ. AP-HP

Last update : 07/21/2015 | Version : 2 | ID : 60178

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name Adult Health Childhood GH
Sign or acronym SAGHE
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL : 18/07/2007
General Aspects
Medical area Endocrinology and metabolism
Health determinants Occupation
Keywords Socio-professional insertion
Scientific investigator(s) (Contact)
Name of the director Carel
Surname Jean-Claude
Address PARIS
Phone + 33 (0)1 40 03 41 05
Email jean-claude.carel@rdb.aphp.fr
Unit CENTRE DE REFERENCE MALADIES ENDOCRINIENNES RARES DE LA CROISSANCE MINISTERE DE LA SANTÉ. AP-HP
Collaborations
Participation in projects, networks and consortia Yes
Funding
Funding status Public
Details AFSSAPS, DGS, INCA, FP7
Governance of the database
Sponsor(s) or organisation(s) responsible HOPITAL ROBERT DEBRÉ
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Cohort study
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is is made on the basis of: Medication(s) taken
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Retrospective Inclusion cut-off date: 01/12/1997
Database objective
Main objective To resolve outstanding issues concerning growth hormone deficiency, Turner's syndrome and patients treated with growth hormone. Secondary objectives: - To explain the frequency and severity of hormonal, metabolic, skeletal, and cardiovascular events during life as well as their determinants. - To identify patient subgroups according to the severity and their phenotypic and/or genetic characteristics in relation to both French molecular genetics laboratories, hospitals and INSERM for developmental pituitary gland abnormalities. - To better understand patient outcome in terms of education, social and professional insertion and psychological impact. - To improve appropriate treatment strategies during childhood and the transition into adulthood. - To reassess the long-term effectiveness of growth hormone treatment for growth hormone deficiency. Several questions remain outstanding, in addition to high cost, the effectiveness on final height as well as the quality of life for a significant number of patients. - To monitor long-term tolerance with particular focus on tumour risk
Inclusion criteria Patients treated with recombinant growth hormone in childhood from 1985 to 1997.
Population type
Age Newborns (birth to 28 days)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area 20 centres throughout France
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 01/1985
Size of the database
Size of the database (number of individuals) [10 000-20 000[ individuals
Details of the number of individuals 10 489
Data
Database activity Data collection completed
Type of data collected Declarative data
Paraclinical data
Declarative data (detail) Paper self-questionnaire
Face to face interview
Paraclinical data (detail) Imaging
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Health care consumption and services
Quality of life/health perception
Care consumption (detail) Hospitalization
Medical/paramedical consultation
Procedures
Data collection method Self-administered questionnaire: manual input from a paper questionnaire with double data entry
Participant monitoring Yes
Details on monitoring of participants Duration: 30 years
Links to administrative sources Yes
Linked administrative sources (detail) CépiDc, RNIAM (MINISTERIAL DECREE OF 4TH MARCH 2008, PUBLISHED IN THE OJ ON 15TH MARCH 2008)
Promotion and access
Promotion
Link to the document http://tinyurl.com/HAL-SAGHE
Description List of publications in HAL
Link to the document http://www.ncbi.nlm.nih.gov/pubmed/?term=SAGHE+AND+Carel[author]
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) To be decided if data may be used by academic teams.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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