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Kidney Research UK and the PKD Charity launch ambitious partnership to progress polycystic kidney disease (PKD) research

30 September 2020

This PKD awareness month, we are delighted to launch our joint partnership with the PKD Charity (PKDC) to progress research in polycystic kidney disease (PKD).  

Our vision is to improve the health and quality of life of people affected by PKD. Together, we want to significantly improve PKD patient outcomes over the next ten years, through a joint research programme. 

New PKD treatments are needed now, for people like Mae

PKD is a genetic condition where several cysts form and grow on various organs in the body, but mainly the kidneys. Affecting over 12 million people around the world and up to 70,000 adults and children in the UK, PKD is the most common genetic kidney disease and the fourth leading cause of kidney failure. There is currently no cure.  

Maegan Smith knows only too well the impact PKD can have. Mae, her dad Wayne and sister Stephanie have autosomal dominant PKD. Wayne lost his own father to kidney disease when he was nine years old. When Wayne’s own kidneys failed, he received gruelling dialysis three times a week for two years – until he recently received a kidney transplant from an anonymous living donor. Mae and Stephanie, both in their twenties, both go to hospital regularly to have their kidney function checked.

Wayne Smith and family
Mae Smith (pictured third from right) with family.

Mae explains: “Most days I don’t think about my kidney disease because I have virtually no symptoms. But some days my mind wanders to my future and the reality hits me smack in the face like a truck.I’m hopeful that before our kidneys fail, new treatments will be available to control our condition. My biggest hope is that if we have our own children one day, they won’t have to live with the same fear of kidney disease that my family has for generations. 

Research is vital to give the family hope

Kidney research is critically underfunded - in the UK, less than 1% of all health research funding goes to kidney research, and a fraction of that amount goes towards PKD research specifically. 

Together with the PKD Charity, we want to address this and are working together to raise awareness and funds for our new joint research programme.  

We are perfectly placed for this work. Kidney Research UK is the largest charity dedicated to research into kidney disease in the UKwe fund work across the whole research pipeline, from better understanding the disease, through to new ways to prevent it. The PKD Charity, as the voice of patients with PKD, will help to design research into PKD, help to identify research priorities, provide stewardship, evaluate research progress and help to disseminate information to patients. 

A partnership with big plans

By working together, we plan to build capacity and capability in PKD research by awarding grants to researchers for projects, studentships, or fellowships. We will bring together our research networks and share governance and programme management. We will make PKD research a priority that benefit patients with the condition 

We aim to: 

  • Increase our understanding of current and new biological pathways, develop new models and biomarkers to study the disease, and identify new ways to treat it
  • Explore the potential around genetics and cell therapies, genomics and use of data resources including the UK Rare Renal Registry RaDaR
  • Move the evidence we gather through to the clinic, as it develops over the coming years
  • Understand complications better, including pain, and develop new approaches towards treatments

Tess Harris, chief executive of the PKD Charity, said:  "I am very excited by this collaboration, which is the result of discussions over several years between our two charities. I inherited ADPKD, along with my three siblings, from my father. I have witnessed the premature death of my father and a sister and am myself on dialysis whilst awaiting a kidney transplant. I have an affected niece and nephew.

PKD partnership
Kidney Research UK and PKD Charity partnership group.

"Over my 15 years with the PKDC, as a trustee and now chief executive, I have had daily contact with PKD patients and family members. I have heard their often tragic and painful stories, their battles with the stress of diagnosis and the prospect of an inevitable future blighted by kidney failure or massive cystic livers."

She continues: “Research is critical to improving their lives. As a small charity, we've been able to fund a few important projects at early research stages, including a biobank of kidney tissue donated by PKD patients and families. Kidney Research UK has been a significant funder of PKD research over 30 years. Yet, the amount spent on PKD research is miniscule compared with amounts spent on cancer, whilst the burden and cost of healthcare for PKD patients and the social burden and costs on their families is disproportionately high. Coming together with Kidney Research UK means we can make research happen much faster.” 

Sandra Currie, chief executive of Kidney Research UK, said: “We are delighted to be launching our partnership with the PKD Charity. The coronavirus pandemic has delayed our launch plans by around six months, and it has certainly challenged our plans to combine forces to raise the money we need. But the pandemic has highlighted the need and urgency for this research, because people living with PKD are more at risk of Covid-19. Now, we are even more determined to invest in more research into this significant area of kidney disease. 

Mae comments: “This joint research programme is a huge step forward for people like me living with PKD – it will hopefully drive some incredible research into this condition forward and give hope to so many. Living with this genetic condition is a huge burden with a turbulent future ahead. Having been part of the discussions from the beginning, I can see passion and excitement from both Kidney Research UK and the PKD Charity, and I really hope the research will find a breakthrough that changes the future for people living with PKD and our children.  

Find out more

Read more about our work in PKD.

Find out more about the PKD Charity.

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