A patient living with a rare chronic disease has told how taking part in a clinical research study has improved her health and wellbeing.
Kat Dunnicliff was in good health when in the summer of 2017 she began to suffer from severe fatigue which made her feel tired all the time.
Her fingers also became swollen, to the extent her wedding ring would no longer fit, and she developed tightness of the skin on her hands, joint pain and Raynaud’s in her fingers, particularly when it was cold.
After visiting her GP Kat was referred to a rheumatologist and diagnosed with systemic sclerosis. Also known as scleroderma, this is a rare, chronic disease affecting the connective tissues, blood vessels and immune system.
Kat, 42, who lives with her husband in Cheadle Hulme, said: “Having systemic sclerosis has a massive impact on your life. The fatigue is the biggest challenge – you have to be sensible and accept what you can do, and what you can’t.”
Kat was offered the opportunity to take part in research after she was referred to Professor Ariane Herrick, a consultant rheumatologist at Salford Royal.
Professor Herrick leads the PRedSS study, which is looking at whether a steroid widely prescribed in the UK and internationally helps patients with systemic sclerosis. The study is supported by the National Institute for Health Research (NIHR).
Kat said: “From a personal point of view, I wanted to take part because systemic sclerosis is a rare condition where there isn’t as much knowledge around medication and treatments. I saw it as a really good opportunity to contribute to research and also, hopefully, get some benefit for me.”
The PRedSS study is a randomised, placebo-controlled study. This means participants are randomly placed into one of two groups – one group is prescribed the steroid and the other a placebo, or ‘dummy’ drug.
Neither the participants, including Kat, nor the health professionals know which group a patient is in until the end of the six-month study.
Kat said: “Taking part involved me taking the study drug every day and attending some regular check-ups throughout the process, which was really convenient for me because I was able to dovetail these with the visits I was having with Professor Herrick anyway.
“I personally found a real benefit of being involved. It actually made me feel better. I suffered less fatigue and it gave me the opportunity to have more time at Salford Royal with the research team and also with my consultant which I’m really grateful for.”
Once the required number of participants have completed the study, the research team will compare the outcomes of patients in both groups. The results will allow them to assess if a moderate dose of the steroid helps relieve the severe pain, itchiness and disability of patients living with systemic sclerosis.
Kat continues to see Professor Herrick and her team, for her quarterly appointments to help manage her condition. She recommends all patients to consider participation in research, regardless of their condition.
She said: “The whole process has been a really positive one for me. I would really encourage people to be open-minded about research opportunities and participate if they think it could be of benefit.
“I can’t emphasise enough that, for me, it was absolutely the right decision and I’ve felt a massive benefit from both a personal and health point of view.”
Update: This study finished early because of the Covid-19 pandemic. Professor Herrick was the senior author on the report A Phase II randomized controlled trial of oral prednisolone in early diffuse cutaneous systemic sclerosis (PRedSS), which warns interpretation must be cautious and results considered inconclusive, indicating the need for a further randomized trial.
You can Be Part of Research
To find a health or social care research study you could take part in, visit bepartofresearch.nihr.ac.uk and search by health condition and postcode. Alternatively, ask your doctor, nurse or health professional about research that is happening near you.