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