ITMO public health
Last update : 07/07/2015 | Version : 2 | ID : 60119
| General | |
| Identification | |
| Detailed name | Prospective Follow-Up of Population with Parkinson's Disease - COPARK Cohort |
| Sign or acronym | COPARK |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | Accord CNIL |
| General Aspects | |
| Medical area |
Neurology |
| Health determinants |
Genetic |
| Keywords | Parkinson's symptoms, activities, daily life, Health episodes, quality of life, treatment, mortality |
| Scientific investigator(s) (Contact) | |
| Name of the director | Rascol |
| Surname | Olivier |
| Address | 31000 TOULOUSE |
| rascol@cict.fr | |
| Unit | INSERM U 825 ET LABORATOIRE PHARMACOLOGIE CLINIQUE DU CHU DE TOULOUSE INSERM |
| Organization | CHU DE |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Funding | |
| Funding status |
Mixed |
| Details | START UP LN PHARMA , ASSOCIATION DE MALADES, INDUSTRIES, INSERM, CHU DE TOULOUSE |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | LN PHARMA |
| Organisation status |
Private |
| 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 carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Inclusion method: Prospective Other bodies active in creating this cohort: CHU, CHG, INDEPENDENT PHYSICIANS Closing date for inclusion: 01/01/2009 |
| Database objective | |
| Main objective | General objective: The objective of this multi-disciplinary project (neurology, pharmacology, epidemiology etc.) is to prospectively gather data in a population of outpatients with Parkinson's disease identified through a regional network of hospital neurologists and independent physicians, concerning the onset and progression of motor signs (tremor, akinesia, rigidity, motor complications, freezing, falls, dysarthria ...) and non-motor signs (pain, anxiety and depressive symptoms, autonomic dysfunction, sleep disorders, dementia, apathy, fatigue ...) of PD using validated scales. We will also gather data on quality of life, treatment (care sought and consumption of medication), morbidity and mortality within the same population. Secondary objective: To develop a biobank in the second phase based on phenotypic and pharmacological characterisations outlined in the COPARK population |
| Inclusion criteria | Parkinson's patients with idiopathic Parkinson's disease (UKPDBB criteria) Over 18 years of age, non-institutionalised, with no atypical Parkinsonian syndrome, having never undergone neurosurgery, with no cognitive impairment (MMSE <24), with no serious life-threatening pathology, who have given signed informed consent. |
| Population type | |
| Age |
Elderly (65 to 79 years) Great age (80 years and more) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
Regional |
| French regions covered by the database |
Aquitaine Limousin Poitou-Charentes Languedoc-Roussillon Midi-Pyrénées Nord - Pas-de-Calais Picardie Pays de la Loire |
| Detail of the geography area | 4 REGIONS THROUGHOUT FRANCE (MIDI-PYRENEES, AQUITAINE, PAYS DE LOIRE, NORD PAS DE CALAIS) |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 12/2006 |
| Date of last collection (YYYY or MM/YYYY) | 01/2013 |
| Size of the database | |
| Size of the database (number of individuals) |
< 500 individuals |
| Details of the number of individuals | 467 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Declarative data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Declarative data (detail) |
Paper self-questionnaire |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Self-administered questionnaire: Entry from a paper questionnaire (Manual input) with double data entry Interview: Entry from paper questionnaire (manual input) with double data entry Clinical Examinations: Handwritten (Manual input) and double data entry |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Follow-up duration: 5 years |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/?term=%28copark+AND+Rascol+O[Author]%29+OR+24839938[uid] |
| Description | List of publications in Pubmed |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Data may be used by academic teams Data access for research members and non-members under contract approved by the cohort Scientific Committee and according to the terms governing the charter between different partners Data may be used by industrial teams Data access for research members and non-members under contract that are approved by the cohort Scientific Committee and according to the terms governing the charter between different partners |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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