We all want scientists and medics to develop the best treatments and cures for us. Understanding XLH and related disorders is the first step. For a rare disease like XLH, it is important to support research that builds understanding, because if we don’t, who will?
Patient involvement means working together with patients, carers and loved ones, to shape research projects as they develop. At XLH UK, we want you to be involved in the research that is done, whether it is contributing evidence, shaping the questions or sharing results.
Sharing your Data
Health data has immense value beyond the direct care of patients. It accelerates the discovery of new treatments and can help medical providers to plan better services. Public confidence in how data is used and protected must be ensured if its full potential is to be unlocked. Any personal data you share should always be on the basis of informed consent.
At XLH UK we have a clear data policy regarding how we use and store your data securely, which you can find here.
The NHS has published a guide as to what happens to health data collected by the NHS which you can find here.
The RUDY study
Rudy is a study in Rare diseases. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient driven research.
They are interested in understanding more about all aspects of rare diseases. Some of this new understanding will be used to develop new tests and treatments for patients with rare diseases. A first step in doing this is to gather information in order to describe in more detail the different types of rare diseases and what it is like to live with them.
Find out more about the RUDY Study
Clinical trials are carefully designed and controlled studies of a new intervention (e.g. a medicine, a physical activity-based treatment or a medical device), involving trial participants who have given informed consent to take part. A clinical trial will establish whether the new intervention is safe, whether it does what the researchers and doctors hope it will, whether there are any side effects, and how the intervention should be given (e.g. if it is a medicine, is it best swallowed as a tablet or taken as an effervescence, dissolved in water, how much and how often).
There are currently no open clinical trials in XLH for adults.
Independent researchers Joe Bonnell and Rachel Lewis have worked with volunteers to produce accessible and thought-provoking videos for sharing. The value of real-life stories are that these not only support those within our community, but also help us to positively influence others regarding some of the daily challenges that XLH presents.
XLH UK has independently commissioned four stories about living with XLH to illustrate the impact on quality of life, to guide medical professionals as to how they can help and build awareness and understanding outside the community. You can find out more here.