ITMO Santé Publique
ITMO Santé Publique
Date de modification : 01/01/2020 | Version : 1 | ID : 38864
| Général | |
| Identification | |
| Nom détaillé | Longitudinal study on Children with Cerebral Palsy Living in Europe |
| Sigle ou acronyme | SPARCLE |
| Thématiques générales | |
| Domaine médical |
Neurology |
| Déterminants de santé |
Genetic Lifestyle and behavior Social and psychosocial factors |
| Mots-clés | cerebral palsy, social / environmental determinants, participation and quality of life, disability |
| Responsable(s) scientifique(s) | |
| Nom du responsable | Colver |
| Prénom | Allan |
| Téléphone | (+44) 191 282 5966 |
| allan.colver@ncl.ac.uk | |
| Laboratoire | The Institute of Health and Society |
| Organisme | Newcastle |
| Collaborations | |
| Participation à des projets, des réseaux, des consortiums |
Yes |
| Financements | |
| Financements |
Mixed |
| Précisions | SPARCLE 1: European Commission Research German Ministry of Health German Foundation for Disabled Child.La Fondation MotriceSPARCLE 2: UK et Ireland: Wellcome Trust Germany: Medical Faculty of University of LuebeckFrance: CNSA, INSERM, MiRe - DREES, IRESP.Denmark: Ludvig and Sara Elsass Foundation; The Spastics Society; VanforefondenItaly: Cooperativa Sociale "Gli Ammi in Tasca", Viterbo; Fondazione Carivit, ViterboSweden: Goteborg University, Riksforbundet for Rorelsehindrade Barn och Ungdomar; Folke Bernadotte Foundation |
| Gouvernance de la base de données | |
| Organisation(s) responsable(s) ou promoteur | European Commission Research |
| Statut de l’organisation |
Secteur Public |
| Organisation(s) responsable(s) ou promoteur | Wellcome Trust |
| Statut de l’organisation | |
| Contact(s) supplémentaire(s) | |
| Caractéristiques | |
| Type de base de données | |
| Type de base de données |
Study databases |
| Base de données issues d'enquêtes, précisions |
Longitudinal study (except cohorts) |
| Origine du recrutement des participants |
An administrative base or a register |
| Critère de sélection des participants |
Another treatment or procedure |
| Informations complémentaires concernant la constitution de l'échantillon | In population from cerebral palsy registers |
| Objectif de la base de données | |
| Objectif principal | The study aims to identify which environmental factors, if improved, will yield the greatest benefits for children with disabilities and their families. This knowledge will inform EU policy in the health, educational and social sectors and generate protocols to optimise outcomes |
| Critères d'inclusion | Children with cerebral palsy (local registers) aged 8-12 years at the beginning of the study |
| Type de population | |
| Age |
Childhood (6 to 13 years) Adolescence (13 to 18 years) |
| Population concernée |
Sick population |
| Sexe |
Male Woman |
| Champ géographique |
International |
| Détail du champ géographique | 9 centres in 7 countries in Europe (France, Sweden, Denmark, Italy, Germany, England, Ireland, Northern Ireland, England) |
| Collecte | |
| Dates | |
| Année du premier recueil | 2004 |
| Année du dernier recueil | 2010 |
| Taille de la base de données | |
| Taille de la base de données (en nombre d'individus) |
[500-1000[ individuals |
| Détail du nombre d'individus | 818 |
| Données | |
| Activité de la base |
Data collection completed |
| Type de données recueillies |
Clinical data Declarative data Administrative data |
| Données déclaratives, précisions |
Face to face interview |
| Données administratives, précisions | Wheelchait Access to trains, to the cinema Financial allocation, availability of specialized servicesCollected at national level: legislation, policy, school practices |
| Existence d’une biothèque |
No |
| Paramètres de santé étudiés |
Health event/morbidity Quality of life/health perception |
| Modalités | |
| Mode de recueil des données | The study will describe and quantify environmental factors at two levels: -at national level such as anti-discrimination legislation : A literature and publications review will be conducted between June 2003 and June 2004 by a sub-contracted social scientist in Edinburgh. It will examine environmental factors at a national macro level by reviewing research literature, EU publications,international reports and European government publications.It will bring together up-to-date information about how environmental factors vary between European countries, mainly concentrating on the countries in the study but will include all those in the EU and those seeking membership. -at local level such as availability of respite care and family experience level such as ease of access to cinemas and sports facilitiesQuality of life will be reported by the children themselves wherever possible using a generic instrument, KIDSCREEN, so that quality of life can be assessed in the same context and with the same instrument in all children. Children with severe cognitive difficulties will not be able to self-report and for this group of children we will use the parent completion KIDSCREEN and CHQ-PF50, and the child's teacher/therapist will also be asked to complete these questionnaires. The study of participation will use the Assessment of Life Habits for children (LIFE-H). |
| Suivi des participants |
Yes |
| Appariement avec des sources administratives |
Yes |
| Valorisation et accès | |
| Valorisation et accès | |
| Lien vers le document | http://www.ncbi.nlm.nih.gov/entrez/eutils/erss.cgi?rss_guid |
| Lien vers le document | http://www.ncbi.nlm.nih.gov/entrez/eutils/erss.cgi?rss_guid |
| Accès | |
| Charte d'accès aux données (convention de mise à disposition, format de données et délais de mise à disposition) |
Resaecrhers may request data for secondary analysis from allan.colver@ncl.ac.uk. We have a request form and applications will be discussed by the SPARCLE partners.
Th availability of data is also set out on the SPARCLE website |
| Accès aux données agrégées |
Access on specific project only |
| Accès aux données individuelles |
Access on specific project only |
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