Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
500 participants
OBSERVATIONAL
2021-01-21
2030-12-01
Brief Summary
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Detailed Description
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All patients with Polycystic Kidney Disease (PKD) with PLD or patients with Isolated (without PKD) Polycystic Liver Disease are eligible for inclusion (\>10 liver cysts).
Data will be collected prospectively and retrospectively including a specific validated PLD questionnaire (PLD-Q).
This registry provides us insight in patient characteristics, risk factors, symptoms, quality of life and treatment strategies in the biggest international PLD cohort so far. Results of this registry will be published and shared at national and international congresses.
Conditions
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Study Design
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COHORT
OTHER
Eligibility Criteria
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Inclusion Criteria
* Patients with PKD and PLD with more than 10 liver cysts
Exclusion Criteria
18 Years
ALL
Yes
Sponsors
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Radboud University Medical Center
OTHER
Portsmouth Hospitals NHS Trust
OTHER_GOV
Responsible Party
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Locations
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Radboud University Medical Center
Nijmegen, , Netherlands
Portmouth Hospitals University NHS Trust
Portsmouth, Hampshire, United Kingdom
Countries
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Central Contacts
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Facility Contacts
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Thijs RM Barten
Role: primary
Joost PH Drenth
Role: backup
Benjamin Giles
Role: primary
Richard Aspinall
Role: backup
References
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Neijenhuis MK, Gevers TJ, Hogan MC, Kamath PS, Wijnands TF, van den Ouweland RC, Edwards ME, Sloan JA, Kievit W, Drenth JP. Development and Validation of a Disease-Specific Questionnaire to Assess Patient-Reported Symptoms in Polycystic Liver Disease. Hepatology. 2016 Jul;64(1):151-60. doi: 10.1002/hep.28545. Epub 2016 Apr 15.
van Aerts RMM, van de Laarschot LFM, Banales JM, Drenth JPH. Clinical management of polycystic liver disease. J Hepatol. 2018 Apr;68(4):827-837. doi: 10.1016/j.jhep.2017.11.024. Epub 2017 Nov 24.
Qian Q, Li A, King BF, Kamath PS, Lager DJ, Huston J 3rd, Shub C, Davila S, Somlo S, Torres VE. Clinical profile of autosomal dominant polycystic liver disease. Hepatology. 2003 Jan;37(1):164-71. doi: 10.1053/jhep.2003.50006.
Other Identifiers
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228220
Identifier Type: -
Identifier Source: org_study_id