Update Videos

March 2015

Video introducing AKU patients Arnold and Marcel, who discuss their experience of being enrolled in our DevelopAKUre clinical trial.

Video introducing AKU patients Charlotte and Anita, who talk about their experience of being enrolled in our DevelopAKUre clinical trial.

Video shows patients enrolled in our DevelopAKUre clinical trial, explaining why the monitoring arm is important and how the clinical trial has benefitted them.

Video introducing Helen, our research nurse, who talks about her experience of being involved in our DevelopAKUre clinical trial.

September 2015
Video released featuring Professor Ranganath. The video gives an overview of the clinical trial programme, why each part is important, and states what progress has been made.

July 2015
A webinar on the progress of the DevelopAKUre trials was held. The focus was mainly around SONIA 2, but patients were able to ask their questions about all aspects of the trials. You can view the full recording here:

February 2015
Recruitment for SONIA 2 finished at all sites across Europe. Recruitment for SOFIA is now underway, with visits set to begin in June 2015.

May 2014
SONIA 2 began at our sites, first in Slovakia and France, and then in Liverpool

November 2013
The last SONIA 1 patient finished at the Slovakian trial site. Our scientists and statisticians are now hard at work working out the best dose to use in SONIA 2 which should begin in February 2014.

May 2013
The 20th of May sees the first group AKU patients attending our Liverpool trial centre to take part in Sonia 1. It will last four-weeks, identifying the most appropriate dose of nitisinone to be used in treating AKU. This dose will then be used in Sonia 2, our four-year trial.

January 2013
Recruitment began for SONIA 1, a four-week trial designed to identify the most appropriate dose of nitisinone to be used over a patient’s lifetime, as well as the most effective dose in reducing levels of homogentisic acid (HGA).

The AKU Society hosted an online seminar about the DevelopAKUre clinical trials. It features a presentation about nitisinone by Dr Lakshminarayan Ranganath. You can view the video recording of the session here.

November 2012
The AKU Society successfully secured £8 million in funding to run the DevelopAKUre clinical trial programme. It is believed to be the first time a UK patient group has been the driving force behind a major international drug research study. The funding includes £4.8 million from the European Commission with another £3.2m from a European consortium including 13 hospitals, pharmaceutical companies and consultancies, universities, biotech companies and national AKU patient groups.

On 1st November, people from all over the world gathered at the 6th International Workshop on AKU in Slovakia. Researchers, clinicians, patients and members of the AKU Society got together to hear about the latest research in the fight against AKU.

October 2012
A new Clinical Trials Coordinator joined the AKU Society team. Hana Ayoob is responsible for recruiting, supporting and motivating patients throughout the progression of the DevelopAKUre trials. She will also be providing logistics support to the test centres where the trials will be taking place.



Welcome To DevelopAKUre

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.


DevelopAKUre Blog

Introducing PhD Student Brendan Norman

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Introducing PhD Student Leah Taylor

In today's blog, we Introduce Leah Taylor, a PhD student who is exploring a way of analysing dis.. ...more