ADPKD is the most common inherited kidney disease, affecting an estimated 12.5 million worldwide. 1 in 10 people under 65 on dialysis has it, and 1 in 8 with a kidney transplant has it. Yet despite this, there are no accepted guidelines for the care of people with ADPKD.
Approaches to the diagnosis, evaluation, prevention and treatment of the renal and extra renal (liver etc) aspects of ADPKD vary widely depending where you live and the knowledge/expertise of your doctors.
At last, the world's experts in ADPKD and global patient representatives are coming together at a KDIGO Conference to determine how to standardise care and improve the outcomes for everyone affected.
Please help us with this work by giving us your comments on the Conference Scope.Read more...
The report 'Kidney Health: Delivering Excellence' was published on 17 October 2013 and identifies the challenges ahead for the UK renal community.Read more...
Addenbrooke's Hospital, Cambridge
9am registration to 4.30pm
- Learn about ADPKD and the latest research
- Put your questions to the medical experts
- Share your experiences with others
Registration will open shortly.
On 5 August, 2013, the US Food and Drug Administration’s (FDA) Cardiovascular and Renal Drugs Advisory Committee met to review the Tolvaptan submission for product licensing.
Here we list published papers on the most important studies into PKD in the past few years. These are either direct links to Papers in the public domain or to an Abstract.
Listen to Dr Donal O'Donoghue, the former National Clinical Director of Kidney Care in England, discuss the Tolvaptan trial and its implications for ADPKD patients. (20 minute video skype chat.)
Find out more about PKD
ADPKD - AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE - is the world’s most common inherited kidney disease, in which fluid-filled cysts develop, multiply and grow in both kidneys. Other organs, such as the liver and brain, may be affected. Between 1 in 400 and 1 in 1000 people worldwide - about 12.5 million - have ADPKD. Over half of those affected will have kidney failure by the time they are 60 years old. Many will experience regular pain, disabiity and anxiety throughout life. If someone has ADPKD, there is a 1 in 2 (50 percent) likelihood that the disease will pass to each child born.
ARPKD - AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE - is a rare disease that affects the kidneys and liver. It occurs in about one in every 20,000 live births in the UK. ARPKD is a severe disease. Sadly, about one baby in three with ARPKD dies from breathing problems during the first four weeks after birth and some will die during pregnancy. However, 8 to 9 in ten babies (80-90 per cent) who survive the first four weeks of life are still alive at five years old. Encouragingly, a good number of children now survive into adulthood and are able to live full and productive lives.