PROactive cohort study
Patient Reported Outcomes in children and Adolescents with Chronic/life-threatening diseases and Tailored InterVentions in a digital Environment (PROactive) cohort study...
Description
Children with a chronic disease face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. In the long run, children with a chronic disease reach developmental milestones later than the...
General Design
- Cohort type
Clinical cohort, Population cohort
- Design
Longitudinal
- Design description
PROactive is a questionnaire-based cohort study focussing on mental well-being, psychosocial well-being and participation, with a life-course perspective using a continuous longitudinal approach. It encompasses children, adolescents, and young adults with chronic conditions across a wide age range and their parent(s). Depending on the timing of diagnosis, participants are included between the ages of 0 and 18.
- Collection type
Retrospective, Prospective
- Start/End year
2016 - ongoing
Population
- Countries
Netherlands (the)
- Regions
Noord-Holland, Noord-Brabant, Utrecht
- Number of participants
3000
- Population age groups
Infant (0-23 months), Child (2-12 years), Adolescent (13-17 years), Young adult (18-24 years)
Contributors
- dr. S.L. (Sanne) Nijhofs.l.nijhof@umcutrecht.nl
- dr. J.W. (Anne) Hoefnagelsj.w.hoefnagels@umcutrecht.nl
- dr. R.C. (Renske) Bosmanr.c.bosman-5@umcutrecht.nl
Additional organisations
- Haaglanden Medical Centre
- Jeroen Bosch Hospital
Available Data & Samples
Data categories
- Survey data
- Medical records
Areas of information
- Socio-demographic and economic characteristics
- Age/birthdate
- Sex/gender
- Marital/partner status
- Family and household structure
- Education
- Other socio-demographic and economic characteristics
- Lifestyle and behaviours
- Nutrition
- Physical activity
- Transportation
- Sleep
- Leisure activities
- Technological devices
- Other and unspecified lifestyle information
- Perception of health, quality of life, development and functional limitations
- Perception of health
- Quality of life
- Functional limitations
- Other perception of health, quality of life and functional limitation-related information
- Symptoms and signs
- Symptoms and signs involving cognition, perception, emotional state and behaviour (R40-R46)
- Physical measures and assessments
- Physical characteristics
- Muscles, skeleton and mobility
- Sensory and pain
- Cognition, personality and psychological measures and assessments
- Cognitive functioning
- Psychological distress and emotions
- Other psychological measures and assessments
- Life events, life plans, beliefs and values
- Life events
- Preschool, school and work life
- Preschool life
- School life
- Work life
- Other preschool, school or work life-related information
- Social environment and relationships
- Social network
- Social participation
- Social support
- Parenting and familial environment
- Other social environment characteristics
- Physical environment
- Housing characteristics
- Administrative information
- Identifiers
- Date and time-related information
- Questionnaire and interview-related information
Subpopulations
List of subcohorts or subpopulations for this resource...
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Collection events
List of collection events defined for this resource...
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Partners
Networks
List of networks in which this cohort is involved...
Publications
Access conditions
The first version of our Data Request & Publication Guidelines is available (dataverseNL). We have outlined the terms and conditions under which data reuse will be permitted. A data request requires researchers to complete an application detailing th...
- Data access conditions
- general research use
- health or medical or biomedical research
- disease specific research
- Data use conditions
- research specific restrictions
- not for profit, non commercial use only
- collaboration required
- user specific restriction
- project specific restriction
- return to database or resource
- clinical care use
- Release type
- Periodically
- Release description
Monthly
Funding & Acknowledgements
- Funding
• PROactive start received in 2015 WKZ onderzoeksfonds grant (nr: R3939; duration April 2016-April 2021 • PROactive Consequences of COVID-19 received in 2022 the Elisabeth v Freyborg grant (nr: N/A; duration July 2020- June 2022) • PROactive extension to non-academic hospitals received in 2022 a ZonMw program quality of care grant (nr: 05160482120001; duration May 2022 – December 2024) • PROactive-YA (adolescents) received in 2023 a Taskforce for Applied Research SIA, (Dutch: Regieorgaan SIA) grant no. RAAK.PRO05.057; duration April 2024 – April 2028.
- Acknowledgements
This research is part of the PROactive cohort. All data originates from children under treatment at the Wilhelmina Children's Hospital Utrecht (WKZ). We are grateful to everyone who participated in this research or worked on this project to make it possible. [Name relevant disease group representatives]