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

follow up with originally 1-year visits, later on 3 year visits...

Cohort type

Clinical cohort

Design

Longitudinal

Design description

follow up with originally 1-year visits, later on 3 year visits

Collection type

Prospective

Start/End year

2014 - ongoing

Population

Netherlands (the)

Number of participants

670

Number of participants with samples

670

Main medical condition
  • XVII Congenital malformations, deformations and chromosomal abnormalities
PID

https://doi.org/10.34760/65266245ce90f

Contact and Contributors

Available Data & Samples

Data categories

  • Biological samples
  • Survey data
  • Imaging data
  • Medical records

Sample categories

  • Fluids and Secretions
  • Genetic material

Areas of information

  • Laboratory measures
  • Socio-demographic and economic characteristics
  • Lifestyle and behaviours
  • Perception of health, quality of life, development and functional limitations
  • Medication and supplements
  • Physical measures and assessments

Subpopulations

List of subcohorts or subpopulations for this resource...

Collection events

List of collection events defined for this resource...

Partners

Access conditions

a proposal can be sent to the steering committee. Upon approval, data and/or biomaterial will be handed over....

Conditions

general research use

Funding & Citation requirements

Funding

kidney foundation health holland

Citation requirements

started upon a grant of the dutch kidney foundation