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
| 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 |
| 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 |
| 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 |
