🧵
🧬 Help shape the future of ADPKD research
Are you living with ADPKD? Your perspective matters.
PKD International is part of the ARTICYST Project, a European initiative bringing together research centres and the patient community to improve the future of ADPKD research.
🧵We are pleased to announce that the UMCG - Universitair Medisch Centrum Groningen in the Netherlands is now officially accredited as a trial site for the STOP-PKD Study.
🧵🧪 Important recruitment update on the STOP-PKD study (1/6)
We are very pleased to share a significant update on the #STOP-PKD study, an important European research initiative for people living with #ADPKD.
🧵 1/4 Living with #ADPKD? Take the survey and use your voice to shape the future of ADPKD research. 📣
survey.uni-koeln.de/index.php/31...
🪡 Read this thread 👇
#PKD #PatientVoice #OpenScience #RareDisease #KidneyHealth #HorizonEurope #European #Research
🧵🧪 Important recruitment update on the STOP-PKD study (1/6)
We are very pleased to share a significant update on the #STOP-PKD study, an important European research initiative for people living with #ADPKD.
My first rare disease day at University Hospital Düsseldorf. Great to see this is an active topic on site.
Looking forward to setting up the Center for Rare and Genetic Kidney Diseases and continuing the efforts to improve patient care and research in this area.
@hhu.de
🚀 STOP-PKD-News!
Das zweite Prüfzentrum in Mainz ist nun offiziell freigegeben. Weitere folgen (DE, NL, ES, AT).
Kann SGLT2-Inhibition das Fortschreiten von Zystennieren positiv beeinflussen?
Infos und Kontakte: stop-pkd.de
#STOPPKD #ADPKD
@pkdinternational.bsky.social @pkdgermany.bsky.social
Looking forward to continuing the collaboration with @pkdinternational.bsky.social in this new position.
Thank you Flavia!
👩🔬 Today is International Day of Women and Girls in Science! Meet Malvika Ramani, PhD student in the group of
@muellerrom.bsky.social at the @unicologne.bsky.social
The important pediatric perspective on CKDx. Moving nephrology towards precision medicine is an effort spanning all age groups.
Improving precision diagnosis in unexplained CKD url: academic.oup.com/ckj/article/...
journals.lww.com/kidney360/fu...
SGLT-2 Inhibition in ADPKD? DAPA-PKD & STOP-PKD - Prof. Emilie Cornec Le Gall & Prof. Roman-Ulrich Müller
youtu.be/9e-UFBnIyDI?...
@ecorneclegall.bsky.social @muellerrom.bsky.social @kronbichlerlab.bsky.social @sarahelena.bsky.social @gunnarheine.bsky.social @marcussaemann.bsky.social
Transition of patients with hereditary nephropathies from pediatric to adult care url: academic.oup.com/ndt/article-...
Transition…such an important topic for improving patient care…but still underrepresented in care pathways.
Tonight it's all about ADPKD!
KDIGO Guidelines / ERA Genes & Kidney Working Group - Prof. Roser Torra, Prof. Roman-Ulrich Müller
youtu.be/qjnYDsYbx0Q?...
@rosertorra.bsky.social @muellerrom.bsky.social @dguerrot.bsky.social @gunnarheine.bsky.social @kronbichlerlab.bsky.social
📹 Interested in a PhD position in aging research starting in 2026? Then watch our new short video for some tips from our wonderful PhD students and faculty.
Don't miss the deadline: November 3, 2025.
Apply now and start your journey with us!
KDIGO 2025 ADPKD Guideline: A commentary on diagnosis and management of hepatopancreatic manifestations by the ERA Working Group Genes & Kidney by Drs. @muellerrom.bsky.social , @joostphdrenth.bsky.social, et al.
academic.oup.com/ndt/article/...
The KDIGO ADPKD Guideline is a milestone for the field.
Building upon this work, experts assembled by the ERA Working Group Genes&Kidney now provide additional practical guidance for polycystic liver disease in #ADPKD.
academic.oup.com/ndt/article/...
@ecorneclegall.bsky.social
CKDx: Simplicity matters, implementation is key url: academic.oup.com/ndt/article/...
At this stage, it is all about widespread adoption of a simple concept: we do not always know the diagnosis in kidney disease. And reporting diagnostic steps in a simple manner enables us to go the next step.
Apply now for a fully funded #PhD position at the Cologne Graduate School of Ageing Research and become part of our vibrant #AgingResearch commmuny.
🗓️ Deadline: November 3, 2025.
ℹ️ More info: www.ageing-grad-school.de
📣 Spread the news!
Obtaining a thorough family history is so important in kidney disease....but often more difficult than expected in clinical practice...
10 tips on how to take a proper family history in CKD patient care url: academic.oup.com/ckj/article/...
Happy to share the nice video @unicologne.bsky.social has produced on our recent publication identifying novel protein biomarkers for #ADPKD.
www.youtube.com/watch?v=FDGN...
rdcu.be/ezvN4
@cecad.bsky.social @uniklinikkoeln.bsky.social
Absolutely. But still no funding to implement these spectacular findings…😉 I guess this will be a long learning process for policymakers…
What happens when #mitochondria fail in high-energy tissues? Cells adjust their metabolism and alter the mechanics of the nucleus! Read more on the discovery by Dr. Harshita Kaul from the Trifunovic Lab in Nature Metabolism.
➡️ uni.koeln/QZURH
#CellStress #NatureMetabolism @unicologne.bsky.social
Mithilfe von #Massenspektrometrie ist es einem Team um @muellerrom.bsky.social vom @cecad.bsky.social an der @unicologne.bsky.social und der @uniklinikkoeln.bsky.social gelungen, den Verlauf von Erkrankungen der #Nieren anhand einer Blutprobe deutlich genauer vorherzusagen als bisher möglich.
KDIGO ADPKD Guideline: A Milestone in Genetic Kidney Diseases Why is a global guideline for ADPKD so important?
Prof. Roman Müller explains how the new KDIGO guideline marks a crucial step forward in harmonizing care for patients with #ADPKD) worldwide 👇
Great thanks to Jörg Bernards-Stiftung and @dfg.de (Excellence Strategy @cecad.bsky.social) for supporting this work and to all patients participating.
Interested in a postdoctoral fellowship on polycystic kidney disease? Linking molecular data with outcome? Please get in touch.
euraxess.ec.europa.eu/jobs/hosting...
Untargeted. Targeted assays for absolute quantification in a prospective study will now have to be the next step towards implementation
📎 Read the full study here: Nature Commun. 16, 6646 (2025) – DOI 10.1038/s41467-025-61887-8
