In this webinar by PKD Australia, the role of evidence-based guidelines within the healthcare system is explored, highlighting how people living with PKD can use them to ask questions, weigh options, and actively participate in decisions about their care:https://www.youtube.com/watch?v=cinpQsSc1LE
🧵🎥 From Guidelines to the Clinic: Shared Decision-Making in ADPKD Care
Clinical guidelines are essential tools in guiding care decisions in ADPKD — but how are they developed, and how can patients use them in real-life settings?
🧵 (3/3) 🌍 Your input will directly contribute to research across Europe.
Take part now: Scan the QR code or follow the link → choose your language → complete the survey
💛 lnkd.in/d2-S6rXi
@flaviagalletti.bsky.social
@uniklinikkoeln.bsky.social
@muellerrom.bsky.social
@oscarsproject.bsky.social
🧵 (2/3) 📝 As AI and Open Science continue to transform healthcare, it is essential that patient voices are part of the process.
This survey will help researchers:
• understand patient perspectives
• identify what matters most
• ensure future tools and research are safe, ethical, and patient-centred
🧵
🧬 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.
🧵 (3/3) 💬 If you are a German speaker, or an international patient living in the area, this event could be a meaningful opportunity to connect with others and feel supported.
🗓️ 18 April, 10:00 AM
📍 Topic: Dialysis visit
📩 Registration required:
via Easy Verein or by email at anmeldung@pkdcure.de
🧵 (2/3) This is why meetings like the PKD-Meeting, organised by our German member PKD Familiare Zystennieren e.V., are so valuable. They offer a welcoming and supportive space for patients and families living with ADPKD, ARPKD, and ADPLD to connect, share experiences, and learn from one another.
🧵 There are moments along the PKD journey that can feel especially challenging. As kidney function declines, questions begin to arise — about dialysis, transplantation, and what lies ahead. Facing this stage alone can feel overwhelming.
🧵 (3/3)📍 Individuals interested in the study can contact the Groningen site to receive detailed information and explore potential participation.
📞 +31 50 3611621 / +31 06 256 48 951
📧 cystenieren@umcg.nl
🔎 More information:
pkdinternational.org/studies/95-s...
#STOPPKD #ADPKD #SGLT2 #Research
🧵 (2/3) The Groningen team, led by Prof. Ron Gansevoort, is highly specialised in nephrology care, with particular expertise in autosomal dominant polycystic kidney disease (ADPKD).
🧵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.
🧵 (6/6)
This is an important step forward for the PKD community and reflects growing momentum in research across Europe.
@flaviagalletti.bsky.social
@muellerrom.bsky.social
@uniklinikkoeln.bsky.social
🧵 (5/6)
Led by the University of Cologne, the study aims to address this gap and explore whether dapagliflozin may help slow disease progression or provide clinical benefits for people with ADPKD.
🧵 (4/6)
The study focuses on #dapagliflozin, an #SGLT2 inhibitor already widely used in other kidney diseases. People with ADPKD have previously been excluded from trials with this class of medication.
🧵 (3/6)
The STOP-PKD study is a multicentre European collaboration investigating a potential new treatment option for Autosomal Dominant Polycystic Kidney Disease (ADPKD).
🧵 (2/6)
Following the initial centres in Cologne and Mainz, several additional German sites are preparing to open for recruitment:
Aachen
Berlin (Charité)
Dresden
Frankfurt
Hannover
Jena
Lübeck
🧵🧪 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.
🧵 4/4 Help shape the future of #ADPKD research in Europe 🔬 - make your voice count!
Take part now:
survey.uni-koeln.de/index.php/31...
Every response strengthens the patient voice. Thank you! 💛
@flaviagalletti.bsky.social @oscarsproject.bsky.social @uniklinikkoeln.bsky.social
🧵 3/4 This survey is essential: because as #AI and #OpenScience transform research, #patientperspectives must lead the way 🗣️
It will:
• Understand how people with PKD perceive these changes
• Identify what matters most to patients
• Ensure safe, ethical, patient-centred research
🧵 2/4 PKDI is a proud member of the ARTICYST Project, part of the Horizon Europe OSCARS Programme—bringing together leading research centres and the patient community. @muellerrom.bsky.social @uniklinikkoeln.bsky.social
🧵 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
Happy Easter from PKD International
To all our members, and to the entire global PKD community — patients, families, healthcare providers and our partners— we send our warmest wishes for this holiday season. 💛
🧵 (6/6)
This is an important step forward for the PKD community and reflects growing momentum in research across Europe.
📄 All info on recruitment and contacts can be found in the flyer
@muellerrom.bsky.social
@uniklinikkoeln.bsky.social
@flaviagalletti.bsky.social
🧵 (5/6)
Led by the University of Cologne, the study aims to address this gap and explore whether dapagliflozin may help slow disease progression or provide clinical benefits for people with ADPKD.
🧵 (4/6)
The study focuses on #dapagliflozin, an #SGLT2 inhibitor already widely used in other kidney diseases. People with ADPKD have previously been excluded from trials with this class of medication.
🧵 (3/6)
The STOP-PKD study is a multicentre European collaboration investigating a potential new treatment option for Autosomal Dominant Polycystic Kidney Disease (ADPKD).
🧵 (2/6)
Following the initial centres in Cologne and Mainz, several additional German sites are preparing to open for recruitment:
Aachen
Berlin (Charité)
Dresden
Frankfurt
Hannover
Jena
Lübeck
🧵🧪 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.
🧵 (6/6)
This is an important step forward for the PKD community and reflects growing momentum in research across Europe.
📄 All info on recruitment and contacts can be found in the flyer
@muellerrom.bsky.social
@pkdgermany.bsky.social
@uniklinikkoeln.bsky.social
@flaviagalletti.bsky.social
🧵 (4/6)
The study focuses on #dapagliflozin, an #SGLT2 inhibitor already widely used in other kidney diseases. People with ADPKD have previously been excluded from trials with this class of medication.