The PKD Partnership

Transforming the future of polycystic kidney disease

The PKD Partnership will advance scientific understanding and develop innovative treatments for polycystic kidney disease (PKD), a rare inherited kidney disease. Through collaborative research, cutting-edge technology and patient engagement, we aim to improve lives and give hope to people living with PKD.

New and more effective treatments will improve overall quality of life and reduce long-term healthcare costs. We invite researchers, clinicians, and those impacted by PKD to join us in this vital work, striving together for a breakthrough in treatment.

The PKD Partnership is led by Kidney Research UK and the PKD Charity, uniting patients, scientists, clinicians, and industry. Through a national programme of collaborative research, data collection and innovation, we aim to accelerate the development of effective treatments and improve the lives of those affected by PKD.

About polycystic kidney disease

PKD is the name for a range of life-threatening inherited disorders that can cause kidney failure and damage to other organs.

There is currently no cure for PKD, available treatments can only slow down cyst growth, relieve some symptoms and support lost kidney function. The PKD Partnership is working towards a future free from the need for dialysis or transplant.

The two main forms of PKD are:

Autosomal dominant polycystic kidney disease (ADPKD)

ADPKD is the most frequently found form of PKD and the most common inherited condition to affect the kidneys.

Cysts develop in the kidneys and liver in late childhood or early adulthood. This leads to loss of kidney function and eventual kidney failure

ADPKD is caused by changes to genes called PKD1 and PKD2. There is a one in two (50%) chance that an affected parent will pass on ADPKD to their child, but sometimes it can occur for the first time in a person with no family history. This new genetic change (mutation) can then be passed to future generations.

On average, people with ADPKD start kidney replacement therapy aged 55 years, although this can vary from person to person. In the UK, of all the adults starting kidney replacement therapy, 1 in 14 have ADPKD.

In the UK there are about 70,000 adults and children with ADPKD. It affects both sexes and all races equally. ARPKD is diagnosed in 1 in 20,000 live births.

Autosomal recessive polycystic kidney disease (ARPKD)

ARPKD is a rarer form of PKD. It may present in very young children or later in adulthood and also leads to loss of kidney function.

Who can get involved with the PKD Partnership

Industry partners

The PKD Partnership offers a new opportunity to co-create solutions for a currently underserved rare disease.

Our phased programme includes creating a PKD data and prospective biobank within NURTuRE, developing advanced diagnostics and supporting clinical trials by creating a ‘clinical trials accelerator’ for innovation and early engagement with research-ready cohorts.

Why get involved:

Shape and align future treatment pipelines

Co-develop impactful, patient-informed studies with recognised key opinion leaders and real-world relevance

Access to a new prospective NURTuRE-PKD cohort*

Partner with trusted UK charities committed to rare disease research

We are seeking strategic partners ready to invest in long-term impact.

NHS and academic researchers

This is a pivotal moment for PKD research in the UK. The PKD Partnership is building infrastructure and networks to support discovery science, clinical innovation and translational research. We are creating a prospective PKD NURTuRE cohort, enabling interdisciplinary collaboration and supporting investigator-led research through co-designed platforms.

Why get involved:

Influence the design and priorities of a national research programme

Access to a new prospective NURTuRE-PKD cohort*

Collaborate with leaders across the charity sector, academia, the NHS, and industry

Join us to help shape a new era in PKD research.

PKD community

The PKD Partnership is a collaboration that has patient benefit at its heart; our decisions will be made with patients, for patients. Our aim is to offer new treatment options that offer real improvements to quality of life.

Research projects will be driven by patient priorities, through a network across the UK.

Whether you live with PKD or care for someone who does, your experience and support are vital to shaping research that truly meets patient needs. We are building a national resource to speed up research and bring treatments closer to reality.

Why get involved:

Help shape research that reflects your needs and priorities

Contribute to a national and international projects that could change future patient outcomes

Stay informed about trials, progress updates, and new opportunities to get involved as the partnership grows

Together, we can drive real change for PKD families.

Why get involved

Shape research

Help design future treatments and influence research priorities.

Change patient outcomes

Partner with and contribute to national and international projects that could change patient outcomes.

Be part of the change

Partner, collaborate and stay informed about opportunities to get involved.

PhD student in the research lab looking in a microscope while working on research for PKD

PKD Partnership research grants

Could your research help shape the future for people affected by polycystic kidney disease?

Opens for applications: 11 August 2025

Closes for applications: 22 October 2025

Find out more

PKD Partnership subgroups

The PKD Partnership subgroups focus on specific areas of work, to enable more targeted collaboration and address key priorities.

The priorities of the six subgroups were established as of 13 May 2025 and may continue to evolve over time to meet the needs of the partnership and ensure meaningful impact for those affected by PKD.

Biomarkers – Professor Jill Norman and Professor Tim Bowen

Genomics and phenotyping – Dr Evi Goggolidou and Dr Omid Sadeghi-Alavijeh

Clinical trials – Dr Roslyn Simms and Dr Ragada El-Damanawi

Standardised preclinical pipeline: establish validated and reproducible in-vitro, ex-vivo and in-vivo PKD models to improve reliability and advance drug testing.

Personalised medicine: combine genetic profiles and biomarkers to develop tailored treatment strategies.

Machine learning for data integration and clinical translation: coordinate with the clinical trial enablement group to design trials that accommodate a personalised medicine treatment plan.

Models and assays – Professor Patricia Wilson and Dr Harry Horsley

Translational therapies – Professor John Sayer and Dr Maria Fragiadaki

Paediatrics – Professor Manish Sinha and Dr Matko Marlais

Areas of strategic interest

The following areas of strategic interest are the focus for our upcoming funding call and have been outlined to align with our overarching aim: to advance scientific understanding and facilitate the development of innovative treatments for PKD through collaborative research, cutting-edge technology and patient engagement.

Biomarker and molecular insights

Identify and validate biomarkers to predict disease progression and treatment response.

Preclinical innovation

Advance reliable experimental platforms to accelerate therapeutic discovery.

Integrated data and translational tools

Leverage large-scale data and computational methods for improved. outcomes

Personalised and preventive care strategies

Develop tailored treatments and early interventions.

Got a question? Get in touch.

Lesley Woolnough, PKD Partnership lead: lesleywoolnough@kidneyresearchuk.org

Audrey Hughes, Patient involvement and engagement officer, PKD Charity: audrey.hughes@pkdcharity.org.uk

The PKD Charity patient helpline: 0300 111 1234 (9am-5pm Monday to Friday, or leave a message)

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The PKD Partnership