DIPAK
Developing Intervention strategies to halt Progression of Autosomal Dominant Polycystic Kidney Disease...
Description
well phenotyped cohort of 670 ADPKD patients with 4 years follow-up (encounting) with data on medical history, biometric data, medication use, lab (blood and urine), biobanking, genotype and MRI...
General Design
- Type
- Cohort study
- Cohort type
- Clinical cohort
- Data collection type
- Prospective
- Design
- Longitudinal
- Design description
- follow up with originally 1-year visits, later on 3 year visits
- Start/End data collection
- 2014 (ongoing)
- PID
- https://doi.org/10.34760/65266245ce90f
Population
- Countries
- Netherlands (the)
- Number of participants
- 670
- Number of participants with samples
- 670
- Main medical condition
- XVII Congenital malformations, deformations and chromosomal abnormalities
- Q60-Q64 Congenital malformations of the urinary system
- Q61.2 Polycystic kidney, autosomal dominant
Organisations
Lead organisations
- University Medical Centre Groningen (UMCG)Netherlands (the)https://www.umcg.nl/
Additional organisations
- Erasmus MCÂ (EMC)Netherlands (the)https://www.erasmusmc.nl/
- Leiden University Medical Center (LUMC)https://www.lumc.nl/
- Radboud University Medical Center (RadboudUMC)Netherlands (the)https://www.radboudumc.nl/
Contributors
- R.T. (Ronald) GansevoortUniversity Medical Centre Groningenr.t.gansevoort@umcg.nl
Principal Investigator, Primary contact
Available Data & Samples
Data categories
- Biological samples
- Survey data
- Imaging data
- Medical records
Sample categories
- Blood
- Blood (whole)
- Blood Buffy Coat
- Fetal blood (Cord blood)
- Plasma
- Serum
- Fluids and Secretions
- Amniotic fluid
- Ascites fluid
- Breath
- Bronchial wash
- Cerebrospinal fluid
- Dialisate
- Feces
- Follicular Fluid
- Milk, Human
- Mouth swabs
- Nasal swabs
- Saliva
- Semen
- Sputum
- Synovial fluid
- Tears
- Urine
- 24h urine
- Urine, first morning
- Urine, random
- Urine, timed
- Genetic material
- DNA
- DNA, Mitochondrial
- RNA
Areas of 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
- 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
- Physical measures and assessments
- Physical characteristics
- Anthropometry
- Circulation and respiration
- Muscles, skeleton and mobility
- Sensory and pain
- Brain and nerves
- Skin and subcutaneous tissue
- Speech and voice
- Digestion
- Reproduction
- Other physical measures and assessments
- Laboratory measures
- Hematology
- Biochemistry
- Microbiology
- Virology
- Immunology
- Toxicology
- Histology
- Genomics
- Other laboratory measures
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
a proposal can be sent to the steering committee. Upon approval, data and/or biomaterial will be handed over....
- Data access conditions
- general research use
- Data use conditions
- research specific restrictions
- Data access fee
- false
- Release type
- Continuous
Funding & Acknowledgements
- Funding
- kidney foundation health holland
- Acknowledgements
- started upon a grant of the dutch kidney foundation