About ADPKD Guide

Why We Built This

ADPKD affects ~600,000 people in the US. Yet patient education is fragmented across clinic handouts, pharma sites, and conflicting social media advice. This project exists to fill that gap:

• Patient-first: Written in plain language, no jargon without explanation
• Evidence-based: Every claim traced to a PMID, DOI, or official guideline
• Honest: No hype, no false hope—we distinguish "what helps now" from "what may help later"
• Transparent: Source code on GitHub, research methodology documented, no corporate influence

Who We Are

Maintainer: Govind Waghmar, who builds and maintains this resource.

How content is produced: Pages are compiled from peer-reviewed journals, clinical-trial registries, and official guidelines, then written in plain language. This is not a substitute for advice from your own clinician.

Want to help review? Clinicians and patient advocates who would like to review content can open an issue on GitHub. Named reviewers will be listed here as they contribute.

How We Ensure Accuracy

Our methodology is rigorous and documented:

• Source priority: RCTs and meta-analyses > cohort studies > case reports > news
• Evidence tiers: Proven (Tier 1) → Promising (Tier 2) → Not Proven (Tier 3) → Speculative
• Conflicts of interest: No pharma funding. Updates funded by community support.
• Contradiction handling: When evidence conflicts, we document both sides honestly
• Regular updates: Automated searches for new papers, manual review cycles

See our full methodology →

Not Medical Advice

This is an educational resource, not a substitute for personalized medical advice. Always discuss treatment decisions with your nephrologist or primary care doctor. We are not liable for decisions made based on this content.

Funding & Support

Current funding: No corporate or pharmaceutical funding. This is an independent, volunteer-maintained project.

Transparency: All code is open source. All data is public. No data is sold.

How to support: Contribute code on GitHub, report errors, or donate to PKD Foundation.

Privacy & Data

If usage analytics are enabled, this site uses Plausible Analytics, chosen because it is privacy-friendly:

• No cookies or local storage
• No personal data collected
• GDPR and CCPA compliant
• Respects Do Not Track (DNT)

Contact & Feedback

Found an error? Have feedback? Open an issue on GitHub or reach out via email (contact details in repo).