GROEICURVES CHARGE CHILD
Groeicurves voor kinderen met CHARGE syndroom...
Description
This database consists of growth measurements as well as CHARGE syndrome and growth related characteristicsics of individuals with CHARGE syndrome....
General Design
- Type
- Cohort study
- Cohort type
- Clinical cohort
- Data collection type
- Retrospective
- Design
- Longitudinal
- Design description
- Growth measurements of individuals with CHARGE syndrome are collected retrospectively from different sources, including patient files, questionnaires for parents, and from another database.
- Start/End data collection
- 2015 (ongoing)
- PID
- https://doi.org/10.34760/652665fe8608e
Population
- Countries
- Germany, Netherlands (the), United States of America (the)
- Number of participants
- 220
- Number of participants with samples
- 0
- Population age groups
- All ages
- Main medical condition
- ORPHAcodes
- CHARGE syndrome
Organisations
Lead organisations
- University Medical Centre Groningen (UMCG)Netherlands (the)https://www.umcg.nl/
Contributors
- dr. G (Gianni) BoccaUniversity Medical Centre Groningen
- prof. dr. CMA (Conny) Van Ravenswaaij-ArtsUniversity Medical Centre Groningenc.m.a.van.ravenswaaij@umcg.nl
Principal Investigator
Available Data & Samples
Data categories
Medical records
Areas of information
- Medication and supplements
- Medication and supplement intake
- Health and community care services utilization
- Hospitalizations
- Physical measures and assessments
- Anthropometry
- Cognition, personality and psychological measures and assessments
- Cognitive functioning
- Administrative information
- Identifiers
- Date and time-related information
Subpopulations
List of subpopulations for this resource...
| Name | Description | Number of participants |
|---|
Collection events
List of collection events defined for this resource...
| Name | Description | Participants | Start end year |
|---|
Access conditions
The use of this data can only be granted on specific terms that will be shared upon request. The data that was included from the CHARGE Syndrome Clinical Database Project (CSCDP)-database will not be available due to the conditions of the data use ag...
- Data access conditions
- disease specific research
- Data use conditions
- not for profit, non commercial use only
- publication required
- ethics approval required
- user specific restriction
- project specific restriction
- Data access fee
- false
- Release type
- Closed dataset
Funding & Acknowledgements
- Funding
- Funding was received from the CHARGE Syndrome Foundation and opleiding arts verstandelijk gehandicapten