The AKU Society, based in Cambridge UK, is one of the major partners in the DevelopAKUre consortium, we have been involved in the DevelopAKUre clinical trials since we helped found the consortium in 2012. Our role is to disseminate information about the trial, to recruit patients for any new studies, such as SOFIA, and assist with the logistics of getting patients from their numerous home countries to the Royal Liverpool University Hospital, one of the 3 DevelopAKUre trial sites.
The AKU Society is a patient led group that aims to support alkaptonuria patients, raise awareness of AKU and promote research into the cause and treatments of the disease. Since we were founded in 2003, we have been championing the need for research into potential treatments for AKU. Due to this we were instrumental in the foundation of the DevelopAKUre consortium and the subsequent successful application for funding from the European Commission.
The AKU Society is in constant communication with patients enrolled at the hospital in Liverpool in SONIA 2 and SOFIA, as well as with the clinical team. We act as a liaison between patients and Liverpool and help to organise travel and hotel rooms as well as to make sure any problems are dealt with quickly and make sure patients feel they are being properly cared for.
In the coming months, however, we will begin booking patients travel and organising expenses payments directly. This will take some of the pressure off the hospital in Liverpool and make the process much more streamlined for our trial patients.
As well as handling logistics, we manage the DevelopAKUre website, updating with informative blogs and content to help explain the work the whole consortium is doing. We promote the website via our own social network channels, and present the clinical trials at numerous conferences, in order to gain the most publicity. We are also in the process of redesigning the DevelopAKUre website in order to make it more accessible and in way that promotes our vital work in as clear a way as possible.
We have also recruited patients from all over the world for SONIA 1, SONIA 2 and most recently SOFIA. We achieved this by contacted doctors and patients; contacts that we have built up over the years since we were founded. Although there are not currently any more studies or trials that we need to recruit for, the AKU Society will always strive to identify new AKU patients, where ever they are in the world, and help them access the right services and treatments.