RUDY is a study in rare diseases headed up by a research team at the University of Oxford. Keep reading or watch the video below to find out more!
Because there are so few patients with XLH, finding new treatments can be slow. Understanding how the condition affects every part of patients’ lives is key to developing future treatments and improving our understanding. So, it’s important to gather as much information as possible.
This is where RUDY comes in. RUDY is looking for
– people who have XLH and
– those who care for someone with XLH.
Who is RUDY for?
If you have XLH or care for someone who does then, yes! RUDY needs you. Your information is invaluable.
Do you have to be on burosumab? No! We need information from patients who haven’t started burosumab treatment yet as well as from those who have.
Collecting information from both of these groups helps to strengthen the case for burosumab as a treatment and to build an accurate map of the UK, highlighting availability issues. Your data will show if parts of the supply chain – from appointment to prescription to delivery – need attention.
Whether you have five minutes or fifty, we really appreciate any time you can spend on RUDY.
What Does RUDY Need From You?
RUDY will give you access to your own, password protected, profile online where you can upload information about yourself, your symptoms and the medicines you take.
If you join RUDY as a carer, there are four questionnaires just for you.
Every profile is laid out in a series of questionnaires which you can fill in all at once or bit by bit. Many are multiple choice and can be completed quickly. If you get stuck or have any questions of your own, you can use the feedback option on the RUDY website to get in touch at any time.
Any information you add to RUDY helps the XLH community.
RUDY requires your consent to collect information and you can change you consent preferences at any time. RUDY takes your privacy very seriously, no one outside the research team will be able to see the information you submit and all your data is stored anonymously.