Our second clinical trial, SONIA 2, is a four-year long trial. If you choose to take part in SONIA 2, you will need to visit a test centre six times over four years. At your first visit, you will be randomly allocated to one of two groups. One group will receive nitisinone and the other group wi.. ...more
Our AKU online communities are excellent opportunities to speak and meet others affected by AKU, whether you're interested in the DevelopAKUre programme or not. Living with a rare disease can be hard; many often report feeling lonely and isolated due to the lack of understanding surrounding thei.. ...more
Nitisinone has been found in early clinical trials to reduce homogentisic acid (HGA) levels by 95%, resulting in patients reporting significantly reduced joint and back pain. (2) Researchers believe that if nitisinone is administered early enough it could prevent the toxic acid from building up,.. ...more
DevelopAKUre is a series of major international clinical trials, run by a consortium of 12 European partners. It aims to study a potential new drug, called nitisinone, and assess its potential effectiveness in treating the rare disease, alkaptonuria (AKU).
DevelopAKUre is co-funded by a grant from the European Commission. This website is run by a UK patient group, the AKU Society. Learn more about AKU on the AKU Society's What is AKU page.
In today’s blog Chief investigator Prof. Ranganath reinforces the need for SONIA 2 pat.. ...more