For many families, childhood kidney disease is something they learn to watch for quietly, through regular checks, appointments and the small changes that can matter over time. When that watchfulness begins early in a child’s life it can feel like a great deal to carry, yet it is also where some of the most reassuring progress is being made. A major new study helps explain why noticing kidney problems early can make such a real difference.
Researchers in Canada have published one of the largest studies yet to look at how often, and how early, kidney problems develop in children born with spina bifida. The work was carried out in Ontario and led by a team at the University of Toronto, and it followed millions of children over three decades. It adds real depth to what we understand about chronic kidney disease and how it is detected and treated across a lifetime.
What the Canadian study found
Published in the journal JAMA Network Open in June 2026, the study drew on health records for more than 4.3 million children born in Ontario between 1992 and 2023, including 12,868 who were living with spina bifida. According to the researchers, children with spina bifida developed chronic kidney disease at a rate of 2.7 per 1,000 person years, compared with 0.3 per 1,000 among the wider group of children. The gap for the most advanced kidney failure, known as end stage renal disease, was wider still. Put simply, childhood kidney disease was many times more common in this group.
Why kidney problems can begin so early
The study also found that kidney problems tended to appear at a younger age. The researchers reported that children with spina bifida were diagnosed with chronic kidney disease at around 5 years of age on average, compared with about 10 years in other children, and reached advanced kidney failure some years earlier too. A number of factors were linked to higher risk, including diabetes, urinary tract stones, repeated complex urinary infections and previous urological surgery. Understanding these patterns is part of the wider kidney research that helps clinicians know when to look more closely.
This article draws on a study published in JAMA Network Open on 26 June 2026, led by researchers at the University of Toronto and ICES in Ontario, Canada. You can read the original research here.
What childhood kidney disease means for families here
It is worth being clear that this research was carried out in Canada, and it looks specifically at children with spina bifida rather than every child. Even so, the message it carries travels well. Spina bifida can affect how the bladder empties, which over time can place strain on the kidneys, so careful monitoring from an early age gives the best chance of protecting kidney function. In the UK, children and adults with spina bifida are usually followed by kidney and urology teams for exactly this reason. Anyone who wants to understand more about how the kidneys work and what can affect them can find clear, patient friendly information to talk through with their own team.
At MRIKPA we welcome research that helps families and clinicians spot kidney problems sooner, because early awareness is one of the most powerful tools any of us has. This is a study from Canada, but the reminder it offers, that childhood kidney disease deserves gentle and ongoing attention, is one that resonates with our community here in the UK.
We are a small community of patients and families who understand this journey from the inside. If it would help to talk with others who truly get it, you are always welcome to reach out at support@mrikpa.org.uk or call 07745 242 684.
Source: Thomas HS and colleagues, Kidney Morbidity in Pediatric Patients With Spina Bifida, JAMA Network Open, 26 June 2026. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2850844
This article is provided for general information and awareness purposes only and was believed to be accurate at the time of publishing. It is not intended as medical advice. Please always consult your doctor or renal team for guidance on your individual circumstances. Images used are for illustration purposes only and may not be medically or editorially accurate. While we take every care, errors can occur. If you spot an inaccuracy, please let us know at support@mrikpa.org.uk.
