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
- Cohort type
Clinical cohort
- 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.
- Collection type
Retrospective
- Start/End year
2015 - ongoing
- Countries
United States of America (the), Netherlands (the), Germany
- Number of participants
220
- Number of participants with samples
0
- Age group at inclusion
All ages
- Main medical condition
- ORPHAcodes
- CHARGE syndrome
- PID
https://doi.org/10.34760/652665fe8608e
Contact and Contributors
- dr. G (Gianni) Bocca
- prof. dr. CMA (Conny) Van Ravenswaaij-Artsc.m.a.van.ravenswaaij@umcg.nl
- DR (Dieuwerke) Dijkd.r.dijk@umcg.nl
Available Data & Samples
Data categories
- Medical records
Areas of information
- Health and community care services utilization
- Hospitalizations
- Medication and supplements
- Medication and supplement intake
- 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 subcohorts or 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 |
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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...
- Conditions
disease specific research
Funding & Citation requirements
- Funding
Funding was received from the CHARGE Syndrome Foundation and opleiding arts verstandelijk gehandicapten