The PKD conversation, in depth.
Research advances raise new choices for people living with PKD. Explore the ideas, tensions and proposed actions that emerged when patients, clinicians and researchers met in Leuven.
The ADPedKD tenth-anniversary symposium and PKD International Patient Voice Day, hosted in Leuven.
Science in context
Early-stage ADPKD and the decade ahead
Experience in the room
Different countries, choices and care systems
Questions into action
Proposed surveys, guidance and research
Two days, one conversation
The scientific programme and the patient discussions asked related questions from different perspectives. This is a synthesis of the meeting reports, not a final consensus statement or clinical guideline.
Advancing frontiers in early-stage ADPKD
The symposium marked ten years of the ADPedKD registry. Its programme spanned paediatric disease, imaging, genetics, hypertension, emerging therapies and the translation of evidence into care. The patient voice challenged research to measure a longer and fuller life, not kidney survival alone.
Patient Voice Day
Moderated by Dr Rachel Giles, the day gave space to patients and national organisations to compare lived experience and question assumptions. Sessions covered the care pathway, testing children, discrimination, family planning, identity, AI and clinical trials.
The programme lists presentations and speakers; it does not provide a record of their findings.
- ADPedKD after ten years — Djalila Mekahli
- KDIGO guidelines and JARDIN implementation — Olivier Devuyst
- Adult treatment options — Roser Torra
- Paediatric therapeutic perspectives — Franz Schaefer
- Mayo, Leuven and paediatric imaging classification — Frederik De Keyzer & Luc Breysem
- Short communications
- Hypertension and vascular dysfunction — Dominique Guerrot
- Childhood ADPKD hypertension and treatment targets — Manish Sinha
- Very early onset PKD, ARPKD and ADPKD — Max Liebau
- Genetic testing — Emilie Cornec-Le Gall
- Atypical ADPKD — Jan Halbritter
- TSC2 and PKD1 — Peter Janssens
- Dietary interventions in young people — Roman Müller
- Early detection and treatment advocacy — Valerie Luyckx
- Patient voice and future impact — Flavia Galletti
- Short communications
Follow a question through the room
Choose a theme. Each view captures what participants raised, where there was broad agreement, and what still needs work.
Care coordinationA care pathway people can use
A clear map should connect stages of ADPKD with the right level of care, from primary care to expert centres.
- Participants favoured expert input early in follow-up or at least once in a lifetime.
- Routine care still depends on coordination with primary care and general nephrology.
- Pain, liver disease, fertility, psychology and transition require multidisciplinary attention.
A pathway only helps when patients can understand it and services can deliver it.
Early diagnosisTesting children at risk
The central distinction was between the possibility of testing and a universal recommendation to test.
- The child’s age, maturity and wishes belong in the decision.
- Clarifying the familial variant in an affected adult can make later testing more meaningful.
- Imaging can also establish a diagnosis, with potential social consequences.
No single answer emerged—and that difference was itself an important finding.
Actionable monitoringBlood pressure before certainty
Even when diagnostic testing is deferred, monitoring can address a treatable manifestation.
- Broad support emerged for regular blood-pressure checks in children known to be at risk.
- Families should know what happens if an elevated reading is found.
- The practical route to monitoring differs by country and care system.
Choosing not to test now need not mean choosing to do nothing.
Rights & accessDiscrimination changes decisions
Insurance and employment consequences can affect whether families seek a diagnosis.
- Rules vary widely between countries and can differ for genetic versus imaging findings.
- Clinicians may not know the exact national legal situation.
- Member organisations proposed mapping reliable country-specific information.
A barrier to diagnosis can become a barrier to healthcare.
Reproductive decisionsFamily planning and choice
PGT may offer a choice, but access, cost and emotional burden vary.
- Information should come before pregnancy without steering families toward one choice.
- Affected and unaffected siblings may experience the condition differently.
- Unexpected findings can complicate a family’s right not to know.
Counselling should be honest about risk without presenting one relative’s course as destiny.
Psychosocial careIdentity and mental health
The discussion moved beyond clinical measures to the place PKD occupies in someone’s life.
- Engulfment, rejection, acceptance and enrichment are fluid experiences, not fixed labels.
- Support should include family dynamics, disclosure, education and work.
- People who avoid their diagnosis may be missing from association-led research.
Psychosocial care needs a place in routine pathways and dedicated research.
Study designClinical trials with patients
Patients described the costs of participation and what research should measure alongside kidney function.
- Travel, school or work absence, scans and consent materials can make participation difficult.
- Pain, fatigue and everyday functioning matter alongside eGFR and kidney volume.
- Results, long-term safety and post-trial access deserve clear plans.
Involving patients early can reveal burdens a protocol otherwise misses.
Information toolsAI and judgement
Patients already use AI to understand health information; the session asked how to use it critically.
- Protect privacy and check cited sources directly.
- Ask for uncertainty, counterarguments and missing information.
- Use the answer to prepare for professional discussion, not to make a clinical decision alone.
A confident, reassuring answer can still be wrong.
These views reflect meeting discussion and proposed follow-up. They should not be read as individual medical or legal advice.
What a useful pathway must connect
The proposed ADPKD pathway places stages of disease alongside levels of care. Explore where the meeting saw a need for coordination and specialist input.
Diagnosis and first questions
An initial map should connect a family history, imaging or genetic questions with an explanation of what the diagnosis may mean for the individual and family.
Care and coordination
Primary care or general nephrology can start the history, arrange initial imaging and monitor blood pressure and urine. Expert input was favoured early in follow-up, ideally for everyone at least once.
Questions the discussion raised
Is the presentation atypical or unusually severe? Are genetics, an at-risk child, insurance consequences or family planning part of the decision?
Ongoing care
Monitoring and treatment continue alongside everyday life. Participants wanted regular care to be coordinated across local and specialist teams, with quality of life taken seriously.
Care and coordination
Routine blood pressure, kidney function and chronic kidney disease management need not all happen at an expert centre. Referral may be needed for rapid decline, complex treatment decisions, pain, cyst infection, stones, liver disease or other complications.
Questions the discussion raised
Who coordinates the different clinicians? Are psychological support and wider symptoms visible in the care plan?
Transition and life plans
The move from paediatric to adult services overlaps with education, work, relationships and reproductive choices. Young people should take part in decisions in ways that fit their maturity.
Care and coordination
A planned handover can help avoid loss to follow-up, especially around ages 15–25. Paediatric and adult teams, genetics, counselling and reproductive specialists may need to cooperate.
Questions the discussion raised
Does the young person know who to contact? Have family planning, disclosure, mental health and the right to participate in decisions been discussed?
Advanced disease
The pathway should continue through advanced kidney disease, dialysis and transplantation without reducing the person to kidney measures.
Care and coordination
Nephrology, transplant and other specialist teams coordinate treatment and preparation. Support for pain, psychological health, family and daily life remains relevant.
Questions the discussion raised
Are future options explained early enough? Is there continuity across treatment changes and care settings?
Who can do what?
The discussion described two axes: stage of disease and level of care. Primary care and general nephrology can take a family history, arrange initial imaging, monitor blood pressure and urine, and manage routine chronic kidney disease. Expert teams help with complex diagnosis, individual risks, family questions, treatment options and research opportunities. Coordination matters because expert centres cannot provide every routine appointment.
When specialist input becomes urgent
Participants raised these reasons to consider earlier expert referral:
- Unusually early or severe disease, rapid kidney function loss, or atypical or syndromic features.
- Major complications outside the kidneys, including significant liver disease.
- Complex genetics, pregnancy or family planning, and assessment of a child or family member at risk.
More than kidney measurements
Care may require expertise in pain, cyst infection, stones, liver disease, intracranial aneurysms, genetics, fertility, psychological health, dialysis and transplantation. A first expert consultation should consider individual and family needs as well as trials, registries and emerging treatments.
Make the pathway usable
Participants welcomed a clear, translatable patient version that could support conversations with clinicians and show health authorities where coordination is missing. Psychological and social support should be visible and properly resourced; members noted it is often absent from routine care or reimbursement.
This is a summary of discussion about the emerging pathway, not the pathway itself or a referral checklist.
Blood pressure in children: the Leuven conversation
Friday’s scientific programme included a presentation on hypertension and treatment targets in childhood ADPKD. Saturday’s Patient Voice Day explored the practical and ethical question: what should happen for a child at risk when a family does not want a formal diagnosis yet?
“Not knowing” need not mean “doing nothing”
Speakers distinguished a decision about genetic testing or imaging from the possibility of checking blood pressure. Hypertension was described as the clearest actionable issue in childhood. A family could defer diagnosis and still discuss monitoring.
A strong direction, not a final statement
When the moderator tested a possible community position, a majority of those present supported blood pressure checks for at-risk children without requiring a diagnosis. This was a show of hands in a meeting, not a formal vote or a final PKD International recommendation.
The actionable step without a diagnosis
Several clinicians argued that childhood high blood pressure can be found and treated, while genetic testing or ultrasound raises a different set of decisions. One described blood pressure as the main actionable item in childhood; another stressed that not checking means an affected child’s hypertension could remain unknown.
- The affected adult’s family history matters: one participant described receiving treatment for high blood pressure for a decade before a clinician considered inherited kidney disease.
- An expert described monitoring children in an at-risk family even while their ADPKD status remained unknown.
- Participants did not equate this with universal diagnostic testing: age, family circumstances and the child’s wishes still matter.
Plan the next conversation before measuring
A paediatric specialist emphasised that families should know beforehand how an elevated reading would be confirmed and investigated. Further assessment may include a diagnostic pathway and ultrasound; in a family with ADPKD, that can have implications beyond the blood pressure result.
- Speakers referred to evidence for treating hypertension in adults, children with chronic kidney disease and emerging paediatric PKD data; the discussion did not present study numbers or a treatment target.
- The possibility of subsequent imaging can matter to families worried about a recorded diagnosis, insurance or employment.
- One centre described a bridge from raising the need for monitoring to an expert consultation where the family and child can discuss next steps.
A routine depends on the health system
Some children see a paediatrician regularly for vaccinations and other care, making blood pressure checks easier to arrange when family history is known. Elsewhere, asymptomatic children may have no comparable route. Participants called for practical approaches that work across countries and continents.
- A speaker preferred a local paediatrician checking blood pressure over no monitoring at all, with expert help available for the consequences of a high result.
- One parent described choosing to defer her children’s diagnosis while continuing to watch their blood pressure and discussing the condition as they grew older.
- The proposed member survey would compare monitoring practice, access to advice, and the legal and social consequences of diagnosis across national systems.
The family’s dilemma
One parent described delaying a 15-year-old daughter’s diagnosis because of possible consequences for insurance and careers, while worrying that delay might cost valuable years. The discussion asked what health action remains possible before that decision is made.
Children need a voice
Speakers urged age-appropriate involvement of the child in discussions about risk, monitoring and diagnosis. They also described counselling for parents on how to talk about an inherited condition without secrecy or unnecessary alarm.
From discussion to evidence
Members proposed mapping how countries monitor at-risk children, whether routine paediatric visits exist, what happens after a high result and how national insurance or employment rules influence family choices.
Source and scope: This is a synthesis of the 4 September symposium programme, the 5 September discussion transcript, the preliminary member report and the Patient Voice Day article. The Friday programme identifies the scientific presentation but does not contain its findings. The Saturday records preserve discussion, not a clinical protocol; no individual patient blood pressure dataset or agreed monitoring interval was reported here.
Identity beyond a diagnosis
Professor Koen Luyckx presented research from several chronic conditions. Participants explored its relevance to ADPKD and called for dedicated PKD research. Select a lens to see how a person's relationship with illness may change.
Engulfment
Illness can become the dominant feature of how someone sees themselves. Research in other chronic conditions links this experience with greater emotional distress. A person can feel overwhelmed at diagnosis or much later; it is not a failure to cope.
Rejection
Avoiding the illness may offer protection from feeling overwhelmed, but can make engagement with care harder. People in this position may be less likely to join a patient organisation or take part in research, so their views can be missing.
Acceptance
Acceptance allows the condition to be acknowledged alongside being a student, partner, parent, professional or friend. Research presented from other chronic conditions associated it with greater life satisfaction and fewer depressive symptoms; ADPKD-specific evidence is still needed.
Enrichment
Some people use their experience to connect, advocate or support peers. This can coexist with fear and difficulty. Volunteering and peer leadership can offer a useful role, but nobody should be expected to turn illness into a positive story.
These are research concepts, not labels for individuals or a sequence people are expected to follow. More than one experience can coexist, and feelings can shift even after decades.
Family and the future
A genetic condition can shape a young person’s expectations before symptoms appear. Children may witness illness in parents or grandparents; affected and unaffected siblings can experience different pressures. Support needs to include the family.
School, work and disclosure
Deciding whether to tell others can balance privacy against access to adjustments and support. Education and employment decisions may be made in the shadow of an uncertain future. Safer environments for disclosure matter.
Care and research
Psychosocial support should help people find a sustainable place for PKD within a wider life, without demanding positivity. Peer connection can reduce isolation, while people who avoid their diagnosis may be missed by association surveys.
Where a simple answer would miss the point
The meeting made differences visible rather than forcing unanimity. Open each question to see the considerations participants placed side by side.
Decisions live in context.
Age, family history, national law, access to expert care and the wishes of the young person can change what is appropriate. Shared decisions require information and room for uncertainty.
Participants distinguished “can be tested” from “should be tested.” Expert counselling, the child’s maturity and views, the familial variant, what action would follow, and possible insurance or employment consequences all matter. Where feasible, clarify the variant in an affected adult first. Ultrasound may also establish a diagnosis.
Regular blood-pressure checks emerged as a practical priority for at-risk children even if testing or imaging is deferred. Families also need to know what further assessment may follow an elevated reading. Implementation differs across health systems.
Families need balanced information before pregnancy about inheritance, PGT and other options, including physical and emotional burdens and variable access. A parent’s course does not predict a child’s exact future. The right to know and the right not to know both need careful handling when findings arise unexpectedly.
Age-appropriate consent, travel support, school-friendly visits, a named contact, clear communication, meaningful outcomes, return of results and plans for follow-up and post-trial access were discussed. Stopping study medication and withdrawing from all follow-up are different choices; participation must remain voluntary.
Turning discussion into evidence
The member report sets out work to develop and test with the community. These are proposals and priorities, not completed commitments or consensus positions.
Clarify shared positions
Draft statements on early diagnosis, genetic testing and monitoring children at risk, then circulate them for review rather than assuming unanimity.
Map national realities
Compare diagnosis, blood-pressure monitoring, expert counselling and national insurance and employment rules to make advocacy more precise.
Understand trial participation
Ask adolescents and young adults roughly 16–30 what would motivate them, what burdens matter and what communication or support they expect.
Study life beyond measures
Develop the CAUTION AI guide and pursue psychosocial research on identity, family dynamics, disclosure and mental health across life stages.
AI and judgement
Patients are already using tools such as ChatGPT, Gemini, Claude and NotebookLM to understand reports, find health information and prepare questions they may hesitate to ask elsewhere. The Leuven discussion explored how to use these tools critically, while keeping clinical decisions with patients and professionals.
Ask with CAUTION
The seven-part framework invites a fuller question than a few search keywords. Select each letter for its purpose, a question to try and a practical caution.
This guide was discussed as a starting point for further development with patients, not as a validated clinical tool.
Context
What background matters to this question?
Provide relevant background without exact names, dates of birth or addresses. An approximate age is often enough.
Try asking: “I am an adult with a family history of ADPKD. What general factors should I discuss with a nephrologist?”
Alternatives
What other options or interpretations should I consider?
Ask for different perspectives rather than letting the first answer narrow the discussion.
Try asking: “What other explanations or approaches should I ask my care team about?”
Uncertainty
What is known, what remains uncertain and how strong is the evidence?
A fluent answer can hide weak evidence or an unresolved question.
Try asking: “Which parts of this answer are well supported, and which remain uncertain?”
Trade-offs
What are the potential benefits and disadvantages?
Request both sides and consider practical burdens as well as clinical outcomes.
Try asking: “What benefits, risks and daily-life burdens might each option involve?”
Information missing
What details would make the answer more useful or change it?
The tool does not know the full history, examination or test results.
Try asking: “What information would a clinician need before answering this for one person?”
Overall picture
How does this question fit into wider health and care?
A narrow response can miss family, mental health and other medical concerns.
Try asking: “What related health, family and quality-of-life issues belong in the discussion?”
Next questions
What should I discuss with a healthcare professional?
Turn the answer into a conversation, not a self-directed clinical decision.
Try asking: “What three follow-up questions would help me prepare for my appointment?”
Protect private information
Names, exact dates of birth, addresses and other identifying details are rarely needed to ask a general health question. An approximate age or range can often provide context. Consider what a prompt reveals about relatives as well as the person asking.
Check the source, not just the citation
AI can give a false statement, invent a reference or cite a real source that does not support the claim. Ask for sources, open them, check what they actually say and compare important claims with trusted material. A confident tone is not evidence.
Expect uncertainty and inconsistency
Different systems may disagree, and the same system may answer differently another time. Ask what is uncertain, what evidence is missing, and what would argue against its first answer. AI may sound overly agreeable or reassuring even when it is wrong.
Use documents with care
A system grounded in a selected guideline can make it easier to trace an answer back to a document. One guideline still cannot cover every clinical situation or replace a specialist’s experience and review. Check the date, scope and relevance of the source.
Frame the question
Include only relevant, non-identifying context. Ask about alternatives, evidence, uncertainty and details that could change the answer.
Challenge the response
Request counterarguments and source links. Check those sources directly, especially for statements about diagnosis, treatment or prognosis.
Take questions to care
Use the result to prepare for an appointment and discuss it with a professional who knows the medical history. Worrying or urgent symptoms need direct medical advice.
What could patient organisations do next? Participants proposed practical prompt toolkits, plain-language guidance, trusted source collections and workshops where patients could test prompts and compare answers. These were ideas for follow-up, not completed resources.
Better questions are a form of progress.
The Leuven discussions connected scientific advances with the decisions people face in clinics, schools, workplaces and families. PKD International’s next task is to test these insights across countries and turn them into evidence, advocacy and practical care.
With thanks to our supporters
The PKD International Global Members Meeting 2026 in Leuven was made possible through the financial support of GSK, Novartis, Otsuka and Vertex. We thank them for helping bring patient representatives, clinicians and researchers together to share knowledge, discuss priorities and strengthen international collaboration.
