ArticlePloS one2017
Clinicians' attitude towards family planning and timing of diagnosis in autosomal dominant polycystic kidney disease.
Article in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- International consensus statement on the diagnosis and management of autosomal dominant polycystic kidney disease in children and young people.Nature reviews. Nephrology · 2019Guideline
- Total Kidney Volume, Hypertension, and Deterioration of Kidney Function in Children with Early-Stage ADPKD.Journal of clinical medicine · 2025Article
- Perspectives of Patients and Clinicians on Reproductive Health Care and ADPKD.Kidney international reports · 2024Article
- Patient-Reported Outcomes Measures, Polycystic Kidney Disease Burden, and Outcomes in Autosomal Dominant Polycystic Kidney Disease.Kidney medicine · 2024Article
- The wind of change in the management of autosomal dominant polycystic kidney disease in childhood.Pediatric nephrology (Berlin, Germany) · 2022Review
- Polycystic Kidney Disease-Related Disease Burden in Adolescents With Autosomal Dominant Polycystic Kidney Disease: An International Qualitative Study.Kidney medicine · 2022Article
- Article
- Ethical challenges in nephrology: a call for action.Nature reviews. Nephrology · 2020Review
- Renal Volume in ADPKD Patient Evaluation.International journal of nephrology · 2020Article
- ADPedKD: A Global Online Platform on the Management of Children With ADPKD.Kidney international reports · 2019Article
- Polycystic kidney disease.Nature reviews. Disease primers · 2018Review
- Unmet needs and challenges for follow-up and treatment of autosomal dominant polycystic kidney disease: the paediatric perspective.Clinical kidney journal · 2018Review
- Antenatally Diagnosed ADPKD.Kidney international reports · 2018Article
- Is Autosomal Dominant Polycystic Kidney Disease Becoming a Pediatric Disorder?Frontiers in pediatrics · 2017Review
- Is It Ethical to Test Apparently "Healthy" Children for Autosomal Dominant Polycystic Kidney Disease and Risk Medicalizing Thousands?Frontiers in pediatrics · 2017Article
- Rare Complication of Renal Torsion in Autosomal Dominant Polycystic Kidney Disease following an Intraperitoneal Kidney Transplantation.Case reports in nephrology and dialysisArticle
Corrections and comments
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Authors and funding
12 authors at 6 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Several ethical aspects in the management of Autosomal Dominant Polycystic Kidney Disease (ADPKD) are still controversial, including family planning and testing for disease presence in at-risk individuals. We performed an online survey aiming to assess the opinion and current clinical practice of European pediatric and adult nephrologists, as well as geneticists. A total of 410 clinicians (53% male, mean (SD) age of 48 (10) years) responded, including 216 pediatric nephrologists, 151 adult nephrologists, and 43 clinical geneticists. While the 3 groups agreed to encourage clinical testing in asymptomatic ADPKD minors and adults, only geneticists would recommend genetic testing in asymptomatic at-risk adults (P<0.001). Statistically significant disagreement between disciplines was observed regarding the ethical justification of prenatal genetic diagnosis, termination of pregnancy and pre-implantation genetic diagnosis (PGD) for ADPKD. Particularly, PGD is ethically justified according to geneticists (4.48 (1.63)), whereas pediatric (3.08 (1.78); P<0.001) and adult nephrologists (3.66 (1.88); P<0.05) appeared to be less convinced. Our survey suggests that most clinicians support clinical testing of at-risk minors and adults in ADPKD families. However, there is no agreement for genetic testing in asymptomatic offspring and for family planning, including PGD. The present data highlight the need for a consensus among clinicians, to avoid that ADPKD families are being given conflicting information.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.