Successful Metabolic support UK Conference
Metabolic Support UK’s Annual Conference
Medialis presented the flagship not-for-profit study investigating disease progression and quality of life in X-linked Hypophosphataemia, at the Metabolic Support UK’s Annual Conference: Improving Patient Access to Specialist Services and Treatments
We are pleased to announce news of new our collaboration with a leading international patient organisation in Inherited Metabolic Disorders, Metabolic Support UK (formerly known as Climb). This alliance aims to improve knowledge and raise awareness of those living with a Metabolic Disorder.
This week, Medialis hosted a ‘kick-off’ meeting for its flag ship not-for-profit study investigating disease progression and quality of life in X-linked Hypophosphataemia.
Designed and sponsored, in its entirety, by Medialis , with the support and valuable insights of Metabolic Support UK, this study was approved on a voluntary basis by the UK’s independent research ethics committee (NHS Health Research Authority) in June 2019. This study is the first of an exciting pipeline of patient-focused research projects under development by our highly experienced Real World Evidence (RWE) Team, with expertise in multi-phase study design and study conduct throughout Europe.
Recruitment to the study is now open and detailed information about participation can be obtained by contacting our dedicated RWE Team at [email protected].
To further support raising awareness and sharing knowledge within this area, Medialis will be attending Metabolic Support UK’s Annual Conference: Improving Patient Access to Specialist Services and Treatments on Saturday 12th October. Members of the Medialis RWE Team will be available to discuss participation in our planned and ongoing research with those interested throughout the day.
We look forward to be able to provide further updates on recruitment and other progress in the coming months…
Disease burden and quality of life in XLH’ study
We have begun the ‘Disease burden and quality of life in XLH’ study. The study set up included going to the UK NHS Research Ethics Committee in a voluntary submission, we were granted a favourable opinion from Yorkshire & The Humber – Leeds East Research Ethics Committee. It is important for us to make sure that any research we are doing is of high quality and meets ethical standards.Find out more