• Melanie Williams

Rudy Study - Patient Lead Research - Get Involved

Last week saw me meet up with the Amazing Rudy Study team at Oxford Botnar Research Centre.

The Rudy Study is a leading light in research into Rare and undiagnosed diseases in the UK. You could say Rudy is rare in itself it was one of the first Patient Lead research programmes in the UK and the model is now being replicated across the world. The idea was devised by Dr. Kassim Javaid, a metabolic specialist who has helped many patients through his care and research. Kassim saw that the patient’s voice was powerful through his consultations. He began to think about his research differently and through conversation discovered that what researchers found interesting was not necessarily useful for patients. So the concept of a patient lead research programme was born. The Study sent information to rare disease support networks across the UK in the hope that patients would wish to be involved. Well of course many of us were thrilled and excited and honoured to become involved. When living with a rare disease the challenges in life are huge and this can all impact on your ability to reach your goals whether in the workplace or for your ambitions in life. It is difficult to commit 100 percent because your condition throws obstacles in the way, this can be pain, mobility, lethargy, fatigue and stamina. We never know how we are going to be from day to day. This doesn’t mean that we are less able in ability it means we have to contribute differently. Being given an opportunity to be a voice on what is rapidly becoming the go to data platform for doctors, researchers and drug trials is uplifting. You feel valued and useful and so your mental health improves and consequently your self management of your rare disease. This is possibly another reason that those affected by rare disease are actively involved in volunteering or running support networks.

I have been taking part in the patient forum for Rudy for over 5 years now. I have looked at the relevance of questions asked on questionnaires. Contributed to research papers. Spoken on the radio about Rudy. Helped develop video information. Had an impact on the way the website looks and feels. Taken part in regular webinars. Looked at future research ideas and have had my suggestions implemented into Rudy and helped turn Rudy into an invaluable patient resource. How is that for being valued as a patient?

In addition to this it is through Rudy that I was picked up as having a specific rare disease which in turn has lead to me receiving a breakthrough treatment. Researchers and doctors found me through the database. Rudy not only collects information it gives back to the patient too. Patients have access to their own profile page with information about the impact of their specific condition. You have a collection of questionnaires answered during your time in the programme which are useful for your own interest or for your health care team. You are able to keep a record of your medication, consultants and a timeline of your health. You can record treatments received, allergies to medication and even print off all the information to make visits to your health care professionals easier. You can even look at your timeline and see the changes in your health over time.

Rudy is presently looking at the impact of how sleep, fatigue and lethargy affect people with rare conditions. This research will be invaluable in developing new care pathways. Historically Rudy has looked at mental health for disease specific groups and has come up with unexpected findings. A huge discovery was that those being given the all clear from cancer didn’t necessarily retain that euphoric feeling of ‘I’m cured!’. Many patients reported a huge depression a few weeks later as it was a time when reality hit after months or years on just focussing on treatment and getting better. Worries of will the cancer return? Families and friends at last being able to admit to how the diagnosis of cancer impacted on their lives. Then followed the feelings of guilt for putting family and friends through a tough time. Body confidence lost because you may look different. Money problems because you have lost your career. Everything leads to a huge depression when doctors, friends and family all think you are ‘cured’ and now back to normal. Rudy having identified this huge problem can now be used by health care professionals to develop a pathway of care following the ‘All Clear’. Potentially this will save the NHS a lot of money but it will also give essential support to those recovering.

To help keep track of your condition over time and also help research and development of new care pathways please click the link and consider joining the RudyStudy. There is information about how your data will be used and you have a choice on what information you share which can be changed by you at any time. The Rudy team are also there if you need to speak to someone before making your decision too.

01865 223407

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