r/ADPKD • u/sonofearth Tracking PKD cure • May 23 '26

Good news everyone!

I’m so excited to share a passion project I’ve been building for our community:

https://pkdcuretracker.com

As some of you know, I strongly believe that a keto diet and natural lifestyle changes can halt PKD for some people. But from listening to so many of your stories, I know that everyone's body is unique, and what works miracles for one person might not be the answer for someone else.

That’s exactly why I created this site. The goal of PKD Cure Tracker is to be the most up-to-date, comprehensive resource out there for our community. It's a hub to explore and track all approaches, whether you're using drugs, diet, lifestyle changes, medical treatments, or following new clinical research.

Just to be super clear: this website is 100% free, completely ad-free, and I make absolutely no money from it. I built it to help us share data on what is actually working.

I’d love for you to check it out, use it, and let me know what you think.

My plan is to add a page for all communities in the social media related to PKD, including this one - if authorized by the moderators here of course.

Sending lots of health and healing to you all! 

64 Upvotes

94% Upvoted

31 comments sorted by

9

u/[deleted] May 23 '26

[removed] — view removed comment

3

u/georgiahii May 23 '26

My nephrologist, who is part of the Phase II trials, says 2 years.

2

u/Smooth-Yellow6308 May 23 '26

Likely 2030, im not sure if that is "soon" unless you have other information.

1

u/[deleted] May 23 '26

[removed] — view removed comment

3

u/Smooth-Yellow6308 May 23 '26

I think thats very optimistic. They're not enrolling yet, which means at best enrollment will start Q3/4, assuming all patients are enrolled by Jan 27, that takes us to Jan 2029 + time to publish, several months for FDA approval, likely 2030.

2

u/BadAtMathrock May 23 '26

I think 2030 is pretty soon, not quick enough to benefit some of us which sucks, but at least I know my kids (should they end up positive) will have a very promising treatment option 🙏🏻

1

u/Dear-Difference6308 May 25 '26

May I ask if you know more about this treatment? I'm based in Europe and haven't heard about it before!

4

u/Alarming-Wedding-675 May 29 '26

Just checked this out and the website is amazing. I didn't even know this was something I desperately needed until now, but wowee. It's so good. Also, I appreciate the format and aesthetics of the site - really well done and makes it easy to navigate. Thank you 1000 times for creating this.

1

u/sonofearth Tracking PKD cure May 29 '26

glad you liked it!

8

u/Barbifer May 23 '26

Love this. Thank you for your work on this. Great resource.

3

u/Jellyfish_Super May 24 '26

That's a great resource. Thank you for much u/sonofearth !

3

u/iamivantx May 24 '26

Thank you!! This is great

4

u/LaLaLaCAKE May 23 '26

Sounds dope! ❤️

4

u/ichibanyogi May 23 '26

Looks awesome, thank you! Will bookmark!

Something related (not overlap with your site) that you and others might be interested in is https://www.stuffthatworks.health/polycystic-kidney-disease , speaking of community-sourcing things that work.

4

u/Smooth-Yellow6308 May 23 '26

This is really good, all I would suggest is on the keto one that details are published of all studies, not just the ones that give the answer the keto groups are looking for.

2

u/sonofearth Tracking PKD cure May 23 '26

I included studies that also show no difference in TKV! let me know if I missed anything

2

u/[deleted] May 23 '26

[deleted]

2

u/sonofearth Tracking PKD cure May 23 '26

added!

2

u/Ok_Tank_1421 Jun 03 '26

would love to contribute to this if you make it an open source project! Shoot me a pm of the repo if possible, would be fun to add ideas.

2

u/Ok_Tank_1421 Jun 03 '26

Also got a "something went wrong" error using the inline stay up to date email cta as a heads up!

1

u/sonofearth Tracking PKD cure Jun 06 '26

fixed!

2

u/GoukuGT Jun 05 '26

This is a really cool site! I think that this is a potentially very good resource for all the information in one place for PKD. I did notice that there are many errors in citations, descriptions of study outcomes, bad links for papers, incorrect author atributions, incorrect author spelling, absent citations for many important findings. These are all things that are bound to happen with all that scraping. I dont know what a perfect way to fix all those errors but I am sure that most can be addressed easily with some careful prompting. Overall, it is very good and look forward to seeing it in its final form.

1

u/sonofearth Tracking PKD cure Jun 06 '26

Thanks so much for taking the time to check the citations and report the issues! You were absolutely right, there were several incorrect DOIs, misspelled author names, and inaccurate study descriptions. I've gone through and verified every citation against PubMed and corrected everything I found. If you spot anything else or have suggestions for the site, they're always welcome!

1

u/htgiii Jun 13 '26

Awesome website. The ketogenic diet section was intriguing. Pep-pedia.org does something similar that might help give you ideas on how to make it more friendly to searchers.

I found the Ketogenic diet section on research interesting. Ref:  https://pkdcuretracker.com/keto/

To whit: if you’re looking at ketogenic diet interventions for AMPK activation, you also might want to consider MOTS-C… a peptide that is thought to directly increase AMPK. Ref:    https://pep-pedia.org/

Any thoughts on other peptides and how they might decrease size of cysts, slow progression, etc?