Hypertension in Children and Young People at Risk of Autosomal Dominant Polycystic Kidney Disease
HIYA-PKD
Family Study of Early Hypertension in Children and Young People at Risk of Autosomal Dominant Polycystic Kidney Disease
1 other identifier
observational
200
1 country
1
Brief Summary
The goal of this project is to measure the prevalence of Autosomal Dominant Polycystic Kidney Disease (ADPKD) and hypertension in the general population of children and young people at risk of ADPKD, using magnetic resonance imaging (MRI) for rapid diagnosis alongside genetic testing. The main question it aims to answer is: What is the prevalence of hypertension in a population sample of adolescents with ADPKD? Participants will have the following measurements performed:
- Height and weight.
- Blood pressure.
- Non-invasive measurement of arterial stiffness.
- Cardiac and renal MRI.
- Blood sample.
- Genetic testing.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Aug 2025
Typical duration for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
August 15, 2025
CompletedFirst Submitted
Initial submission to the registry
November 13, 2025
CompletedFirst Posted
Study publicly available on registry
December 2, 2025
CompletedPrimary Completion
Last participant's last visit for primary outcome
March 1, 2028
ExpectedStudy Completion
Last participant's last visit for all outcomes
March 1, 2028
December 2, 2025
October 1, 2025
2.5 years
November 13, 2025
November 20, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Number of participants with hypertension in general population of children and young people at risk of ADPKD.
Diagnosis of hypertension from clinic manual blood pressure and 24 hours ambulatory blood pressure measurement
Day 1
Secondary Outcomes (5)
Number of participants diagnosed with ADPKD from renal MRI compared to the number from genetic testing.
Day 1
Number of participants with cyst negative but gene positive ADPKD in this age group.
Day 1
Number of participants with abnormal albuminuria in the population at risk of ADPKD.
Single time point
Central blood pressure in young people with ADPKD compared to healthy controls
Day 1
Arterial stiffness in young people with ADPKD compared to healthy controls
Day 1
Study Arms (2)
ADPKD positive
Participants with positive renal MRI and/or genetic test for ADPKD
ADPKD negative
Participants with negative renal MRI and genetic test for ADPKD
Eligibility Criteria
General population of children and young people at risk of ADPKD
You may qualify if:
- Age 12 - 17 years at the time of consent
- Able to tolerate the key study investigations (office blood pressure measurement, ambulatory blood pressure measurement, MRI and blood test)
- Parent with confirmed clinical diagnosis of ADPKD
- Parent (if child \<16 years) or both parent and young person (if \>=16 years) consents to genetic testing for ADPKD and demonstrates understanding of the implications of this.
You may not qualify if:
- years or above at the time of study entry
- Unable to tolerate key study investigations
- Presence of associated co-morbidities which make it difficult to interpret results, including congenital cardiac anomalies and known TSC-PKD1 mutations
- Unwilling to undergo genetic testing for ADPKD
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- King's College Londonlead
- Guy's and St Thomas' NHS Foundation Trustcollaborator
Study Sites (1)
Evelina London Children's Hospital
London, SE1 7EH, United Kingdom
Related Publications (3)
Ecder T, Schrier RW. Cardiovascular abnormalities in autosomal-dominant polycystic kidney disease. Nat Rev Nephrol. 2009 Apr;5(4):221-8. doi: 10.1038/nrneph.2009.13.
PMID: 19322187BACKGROUNDPei Y, Obaji J, Dupuis A, Paterson AD, Magistroni R, Dicks E, Parfrey P, Cramer B, Coto E, Torra R, San Millan JL, Gibson R, Breuning M, Peters D, Ravine D. Unified criteria for ultrasonographic diagnosis of ADPKD. J Am Soc Nephrol. 2009 Jan;20(1):205-12. doi: 10.1681/ASN.2008050507. Epub 2008 Oct 22.
PMID: 18945943BACKGROUNDTorres VE, Harris PC, Pirson Y. Autosomal dominant polycystic kidney disease. Lancet. 2007 Apr 14;369(9569):1287-1301. doi: 10.1016/S0140-6736(07)60601-1.
PMID: 17434405BACKGROUND
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Manish Sinha, PhD, MRCP (UK), MRCPCH
King's College London
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- CASE CONTROL
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
November 13, 2025
First Posted
December 2, 2025
Study Start
August 15, 2025
Primary Completion (Estimated)
March 1, 2028
Study Completion (Estimated)
March 1, 2028
Last Updated
December 2, 2025
Record last verified: 2025-10
Data Sharing
- IPD Sharing
- Will not share
IPD will not be shared beyond the study team.