Funding would be well spent, both in human terms and in reducing the financial burden.
Many people are unaware that autosomal dominant polycystic kidney disease (ADPKD) is one of the most common life-threatening genetic diseases on the planet, with an incidence of about 1 in 1,000. It affects some 12.5 million people worldwide, making it twice as common as multiple sclerosis and five times as common as cystic fibrosis. On top of the human cost, it causes a financial drain on health provision, including dialysis and transplantation services. In the United States the impact of ADPKD has long been recognized, yet in Europe funding for research into this disease is sorely lacking. This needs to change.
Last year, ADPKD was the only kidney disease singled out by the US Senate Committee on Appropriations for special attention. In 2003, $1.72 billion was appropriated for the National Institute of Diabetes and Digestive and Kidney Diseases, which has a strategic plan to tackle ADPKD and free up more than 3,000 places on kidney transplant lists, saving $2 billion annually in ADPKD-related costs. The research budget for the major PKD charity in the United States, the PKD Foundation (http://www.pkdcure.org), is currently more than $2.5 million.
The contrast with Europe is striking. In Britain, the Medical Research Council spent nothing on ADPKD in 2001–02 and just £213,000 (US$395,000) in the previous year. Sadly, there are fewer than five specialist ADPKD research groups in Britain, even though global research has accelerated since the identification of the gene products responsible a decade ago. The UK charity the National Kidney Research Fund considers ADPKD research a strategic objective, yet it lacks sufficient high-quality applications to fund more than four ADPKD-focused projects from a total of 80 awards. Britain's PKD Charity (http://www.pkdcharity.co.uk), of which I am a trustee, is in its infancy and currently has no opportunity to sponsor research.
Our European neighbours are faring no better. Budget cuts in France have hit medical research hard, including ADPKD studies, so laboratories are being depleted of their brightest young associates for lack of funding. How the next round of funding from the European Union, the Framework 6 programme, will respond to the US lead in this area is yet to be seen. Within the Framework's calls for research to tackle major disease, there is no particular focus on ADPKD, despite a clear emphasis on rare genetic conditions. Without such strategic thinking, European ADPKD research will continue to suffer.
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Influence of ACE I/D gene polymorphism in the progression of renal failure in autosomal dominant polycystic kidney disease: a meta-analysis
Nephrology Dialysis Transplantation (2006)