Further Reading Resources
Want to learn more about ADPKD? This page collects authoritative guidelines, research institutions, patient organizations, landmark trials, and patient education materials β all from reliable sources.
About These Links
All links on this page have been initially screened. We prioritize authoritative academic institutions, official guidelines, and peer-reviewed journals. We do not link to commercial promotions, unverified folk-remedy sites, or pages with prohibited medical claims. External content may change over time β if you find inappropriate linked content, please let us know. Linking externally does not equal endorsement of all content.
Authoritative Clinical Guidelines
Clinical guidelines are key references for physicians and a reliable source for patients to understand "what is standard practice." The following are issued by authoritative nephrology societies and reviewed via evidence-based medicine.
- KDIGO 2025 ADPKD Clinical Practice Guideline β Issued by KDIGO, the international nephrology authority. Covers diagnosis, evaluation, risk stratification, and treatment. View guideline β
- Chinese ADPKD Diagnosis and Treatment Guideline (2024) β Issued by the Chinese Society of Nephrology, tailored to Chinese patient characteristics. CMA β
- ERA-EDTA ADPKD Guideline β Issued by the European Renal Association. ERA-EDTA β
- RAAP Risk Stratification (2024) β ADPKD risk assessment tool to help judge disease progression speed. View article β
Authoritative Research Institutions and Academic Organizations
These institutions are leading authorities in ADPKD research, regularly publishing new findings and patient education materials.
- KDIGO (Kidney Disease: Improving Global Outcomes) β International nephrology guideline organization. kdigo.org β
- ERA-EDTA (European Renal Association) β Europe's largest nephrology academic organization. era-edta.org β
- ASN (American Society of Nephrology) β US nephrology academic authority. asn-online.org β
- ISN (International Society of Nephrology) β Global nephrology organization providing educational resources and guidelines. theisn.org β
- Chinese Society of Nephrology β Chinese nephrology academic organization. cma.org.cn β
- PKD Foundation (US) β Nonprofit dedicated to ADPKD research funding and patient education. pkdfoundation.org β
- Mayo Clinic ADPKD Research Center β Mayo Clinic is a leading ADPKD research institution and originator of the TKV measurement method. Mayo Clinic β
- NIDDK (US National Institute of Diabetes and Digestive and Kidney Diseases) β NIH institute providing authoritative patient education materials. NIDDK β
Patient Organizations and Support Groups
Patient organizations provide peer support, latest research news, and advocacy. The following are internationally recognized ADPKD patient organizations.
- PKD Foundation (US) β The world's largest ADPKD patient organization, providing research funding, patient education, and support events. pkdfoundation.org β
- PKD Charity (UK) β UK ADPKD patient charity providing patient information and psychological support. pkdcharity.org.uk β
- PKD Foundation of Canada β Canadian ADPKD patient organization. endpkd.ca β
- European PKD Federation β European ADPKD patient alliance uniting national organizations. pkdinternational.org β
Note
Patient organizations provide valuable information and support, but specific treatment decisions still need to be discussed with your doctor. Healthcare systems and drug availability may differ across countries.
Landmark Trials and Milestone Studies
The following papers are milestone studies in ADPKD that have changed clinical practice. Links point to PubMed or journal originals; abstracts are freely accessible.
Tolvaptan
- TEMPO 3:4 Trial (2012) β Key RCT showing tolvaptan slows ADPKD progression. NEJM. PubMed β
- TEMPO 4:4 Extension Trial (2017) β Long-term efficacy and safety of tolvaptan. Am J Kidney Dis. PubMed β
- REPRISE Trial (2017) β Tolvaptan efficacy in advanced ADPKD. Lancet. PubMed β
Disease Progression and Risk Factors
- CRISP Study Cohort β Longitudinal imaging study that established TKV growth rate as a prognostic indicator. J Am Soc Nephrol. PubMed β
- Caffeine and Cyst Growth (2015) β Cellular and animal evidence that caffeine stimulates cyst fluid secretion. J Am Soc Nephrol. PubMed β
- Salt Intake and ADPKD Progression β Protective effect of low-salt diet in ADPKD. Am J Kidney Dis. PubMed β
Blood Pressure Management
- HALT-PKD Study (2014) β Effect of ACEI/ARB dual blockade and strict blood pressure control in ADPKD. J Am Soc Nephrol. PubMed β
- ADPKD Blood Pressure Targets β Effect of strict blood pressure control (<110/75) on TKV and eGFR. JASN. PubMed β
Genetics and Inheritance
- PKD1/PKD2 Genotype-Phenotype Correlation β Relationship between mutation type and disease severity. J Am Soc Nephrol. PubMed β
- ADPKD Genetic Counseling Guideline β Practice guideline from the National Society of Genetic Counselors. J Genet Couns. PubMed β
Imaging and Diagnosis
- Mayo TKV Classification System β Imaging classification for ADPKD risk stratification based on TKV growth rate. J Am Soc Nephrol. PubMed β
- MRI in ADPKD β Standardized protocol for MRI-based TKV measurement. Radiology. PubMed β
Patient Education Materials
The following resources are aimed at patients and families, explaining ADPKD in plain language. Suitable as introductory reading.
- NIDDK Patient Education β NIH ADPKD patient guide, authoritative and accessible. NIDDK β
- Mayo Clinic Patient Information β ADPKD patient education covering symptoms, diagnosis, and treatment overview. Mayo Clinic β
- MedlinePlus ADPKD β US National Library of Medicine patient information linking multiple reliable sources. MedlinePlus β
- NHS (UK) ADPKD Page β Patient information from the UK National Health Service. NHS β
- UpToDate Patient Education β Evidence-based patient education articles (some content requires registration). UpToDate β
Literature Search Tools
If you want to search ADPKD literature yourself, these tools can help.
- PubMed β Free literature database from the US National Library of Medicine; search all medical literature abstracts. Search ADPKD β
- Cochrane Library β Systematic review database providing high-quality evidence reviews (some free). Cochrane β
- ClinicalTrials.gov β Global clinical trial registry; find ongoing ADPKD trials. Search ADPKD trials β
- Google Scholar β Academic search engine; search full text (some require institutional access). Google Scholar β
How to Read a Medical Paper
If you are reading medical papers for the first time, the following tips may help.
- Read the abstract first β The abstract summarizes the study's purpose, methods, results, and conclusions; it's the best entry point for quick relevance assessment
- Note the study type β Evidence hierarchy from high to low: Systematic review > RCT > Cohort > Case-control > Case report > Expert opinion
- Check sample size β Larger samples yield more reliable results. Conclusions from studies of dozens of people should be treated cautiously
- Pay attention to confidence intervals β A narrower 95% CI means a more precise estimate. If the CI crosses 1 (for odds ratios), the result may not be significant
- Distinguish correlation from causation β Observational studies can only prove "association," not "causation"
- Check funding source β Industry-funded studies may have conflicts of interest; note disclosure information
- Don't rely on a single paper β A single study's conclusion may be chance; multiple consistent studies are more credible
β Important Reminder
Reading papers and research does not mean you can self-diagnose or self-treat. Research conclusions apply to populations, not directly to individuals. Discuss any treatment decisions with your nephrologist.
Link Screening Criteria
All external links on this page have been initially screened against the following criteria:
- Trusted source β Prioritize .gov, .edu, .org domains and well-known academic journals
- No commercial promotion β Do not link to pharmaceutical company promotion pages or "popular science" articles with ads
- No prohibited medical claims β Do not link to pages claiming "cure," "root cure," or "alternative treatment"
- Peer-reviewed β Paper links point to PubMed or journal originals, all peer-reviewed sources
- Periodic review β We periodically check link validity; if you find broken links or content changes, please let us know
References
- KDIGO 2025 Clinical Practice Guideline on ADPKD β KDIGO. Kidney International, 2025. View guideline
- Tolvaptan in Patients with ADPKD (TEMPO 3:4) β Torres VE, et al. NEJM, 2012. PubMed
- HALT-PKD Trial β Torres VE, et al. J Am Soc Nephrol, 2014. PubMed
- CRISP Study β Grantham JJ, et al. J Am Soc Nephrol, 2006. PubMed
- Mayo Classification of ADPKD by TKV β Irazabal MV, et al. J Am Soc Nephrol, 2015. PubMed
Last updated: 2026 Β· knowledge base refinement