ICE : Informal Carers of the Elderly - Longitudinal Study on Chronic Disease Caregivers: New Forms of Optimised Support for Quality of Life, Cost and Wellness

Head :
NERICH Virginie, INSERM UMR 1098

Last update : 09/16/2019 | Version : 1 | ID : 22906

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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 Longitudinal Study on Chronic Disease Caregivers: New Forms of Optimised Support for Quality of Life, Cost and Wellness
Sign or acronym ICE : Informal Carers of the Elderly
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CCTIRS (11/05/2015) ; CNIL (23/06/2015) : N°914646) ; CPP Est II (4/11/2016) ; amendement n°1 (18/09/2017), amendement n°2 (23/10/2017) amendement n°3 (19/03/2018), amendement n°4 (24/09/2018)
General Aspects
Medical area Cancer research
Cardiology
Geriatrics
Neurology
Ophthalmology
Urology, andrology and nephrology
Health determinants Healthcare system and access to health care services
Lifestyle and behavior
Others (specify)
Keywords caregivers, life trajectory, Health Quality of life, olders, chronic diseases, social support
Scientific investigator(s) (Contact)
Name of the director NERICH
Surname Virginie
Address Pôle Pharmaceutique - Boulevard Fleming - 25 030 BESANCON Cedex
Phone + 33 (0)3 70 63 22 86
Email v1nerich@chu-beasncon.fr
Unit INSERM UMR 1098
Organization CHU
Collaborations
Participation in projects, networks and consortia Yes
Details Besançon hospital - Dijon hospital-Centre Georges François Leclerc-Pôle de Gérontologie et d'innovation-University of Burgundy-Franche-Comté
Funding
Funding status Mixed
Details - Novartis Pharma Laboratory - CNSA (National Solidarity Fund for Autonomy) - Roche Foundation - INCa (French National Cancer Institute) - CARSAT Burgundy Franche-Comté (Pension Insurance and Occupational Health Fund)
Governance of the database
Sponsor(s) or organisation(s) responsible Besançon Hospital
Organisation status Public
Presence of scientific or steering committees Yes
Additional contact
Name of the contact Pozet
Surname Astrid
Address Unité de Méthodologie et Qualité de Vie en Cancérologie
PC BIO
3 Bd A Fleming
25030 Besançon
Phone + 33 (0)3 70 63 21 79
Email apozet@chu-besancon.fr
Unit UMQVC (INSERM 1098)
Organization CHU de Besançon
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 care professionals
A selection of health institutions and services
Database recruitment is is made on the basis of: Another treatment or procedure
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Caregiver is identified during clinical consultation for recent chronic disease diagnosis using an identification questionnaire.
Database objective
Main objective To identify caregiver needs and expectations in order to consider the establishment of new forms of optimised support for quality of life, cost and wellness.
Inclusion criteria - male and female
- adult
- informal caregivers assisting a relative that is at least 60 years old with a recently diagnosed chronic condition
- residing in Burgundy or Franche-Comté
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 General population
Pathology
Gender Male
Woman
Geography area Regional
French regions covered by the database Bourgogne Franche-Comté
Detail of the geography area Burgundy and Franche-Comté
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2013
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 8,604
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Cost data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Paper self-questionnaire
Internet self-questionnaire
Face to face interview
Phone interview
Details of collected declarative data Quarterly interviews conducted by a social worker.
Presence of a biobank No
Health parameters studied Health care consumption and services
Quality of life/health perception
Others
Care consumption (detail) Hospitalization
Medical/paramedical consultation
Medicines consumption
Procedures
Data collection method Data collected by a social worker.
Participant monitoring Yes
Monitoring procedures Monitoring by contact with the participant (mail, e-mail, telephone etc.)
Details on monitoring of participants Monitoring the life trajectory of caregivers during caregiving support relationship over 5 years.
Links to administrative sources No
Promotion and access
Promotion
Link to the document Pozet_Trials_16.pdf
Access
Dedicated website https://www.etude-ice.org/accueil
Terms of data access (charter for data provision, format of data, availability delay) Contact the person in charge.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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