FDPD+
First Dutch PKU+ Database...
Description
The FDPD is a database with data from patients with metabolic diseases. Data is collected from clinical care and scientific studies. The focus is on biomarkers and social and neurocognitive functioning. Additionally, participants are followed prospec...
General Design
- Type
- Cohort study
- Cohort type
- Clinical cohort
- Data collection type
- Retrospective, Prospective
- Design
- Longitudinal
- Design description
- Data is collected retrospectively from clinical care and scientific studies. In addition, patients are being followed longitudinally. Study visits are combined with regular care visits.
- Start/End data collection
- 2024 (ongoing)
- PID
- https://doi.org/10.34760/6800dbfcd937b
Population
- Countries
- Netherlands (the)
- Regions
- Groningen
- Number of participants
- 66
- Population age groups
- All ages
- Main medical condition
- IV Endocrine, nutritional and metabolic diseases
- E70-E90 Metabolic disorders
- E70.2 Disorders of tyrosine metabolism
- Inclusion criteria
- Defined population inclusion criterion
Organisations
Lead organisations
- University Medical Center Groningen (UMCG)Netherlands (the)https://www.umcg.nl
Data originator, Data holder, Data provider
Contributors
Available Data & Samples
Data categories
- Survey data
- Medical records
- Physiological/Biochemical measurements
- Other
Areas of information
- Administrative information
- Identifiers
- Date and time-related information
- Questionnaire and interview-related information
- Physical and cognitive measure and biosample-related information
- Data and sample collection center-related information
- Other administrative information
- Socio-demographic and economic characteristics
- Age/birthdate
- Sex/gender
- Twin
- Marital/partner status
- Family and household structure
- Education
- Residence
- Birthplace
- Citizenship and immigrant status
- Ethnicity, race and religion
- Language
- Labour force and retirement
- Job history
- Parental occupation
- Income, possessions, and benefits
- Other socio-demographic and economic characteristics
- Lifestyle and behaviours
- Tobacco
- Alcohol
- Drugs
- Nutrition
- Breastfeeding
- Physical activity
- Transportation
- Personal hygiene
- Sleep
- Sexual behaviours and orientation
- Leisure activities
- Technological devices
- Misbehaviour and criminality
- Other and unspecified lifestyle information
- Perception of health, quality of life, development and functional limitations
- Perception of health
- Quality of life
- Life course development
- Functional limitations
- Use of assistive devices
- Other perception of health, quality of life and functional limitation-related information
- Medication and supplements
- Medication and supplement intake
- Chemotherapy interventions
- Posology and protocol of administration
- Other and unspecified pharmacological interventions
- Laboratory measures
- Hematology
- Biochemistry
- Microbiology
- Virology
- Immunology
- Toxicology
- Histology
- Genomics
- Other laboratory measures
- Cognition, personality and psychological measures and assessments
- Cognitive functioning
- Personality
- Psychological distress and emotions
- Other psychological measures and assessments
- 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
Subpopulations
List of subpopulations for this resource...
| Name | Description | Number of participants | |
|---|---|---|---|
No results for current selection |
Collection events
List of collection events defined for this resource...
| Name | Description | Participants | Start end year | |
|---|---|---|---|---|
No results for current selection |
Access conditions
Data issuance is organised through the Central Ethics committee of the UMCG...
- Data access conditions
- disease specific research
- Data use conditions
- research specific restrictions
- ethics approval required
- institution specific restriction
- Release type
- Closed dataset