Shaping our research priorities
Here is some information on our priorities for research
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Clinical trials
A clinical trial is the best way we have of finding out which treatment works for a particular condition. Clinical trials compare one treatment against another in the most fair way possible to find out which one works the best. In cases where there are no approved treatments for a particular diagnosis, a clinical trial may compare a genuine potential treatment against a placebo, or 'dummy 'treatment' that will have no effect.
Anyone can take part in a clinical trial as long as you meet the inclusion/eligiblity criteria - it is important to check these criteria before applying to join a trial to ensure you are eligible to take part.
By supporting trials you will be helping to find the best treatments possible to manage the symptoms and effects of scleroderma and Raynaud's.
What are the different types of clinical trials?
1. Observational
An observational study involves no new treatments and solely the observation of your current state. It might include:
- samples being taken, such as blood
- measurements being taken
- an interview or questionnaire
2. Interventional
Interventional studies involve receiving a new treatment, for example physiotherapy or new drug, to assess the impacts. These studies are generally:
- 'Placebo controlled' – some receive the treatment and others do not
- 'Double blind' – neither the researchers nor patient know whether the patient has received the real treatment or the placebo until the end of the study
- 'Randomised' – neither the patient nor researchers choose whether the patient gets the real treatment or the placebo
3. Qualitative
Qualitative research aims to understand more about people's experience of living with a condition. This type of research involves being asked questions or having an open discussion. You might be asked questions about anxiety, pain, or of doing day-to-day activities, for example. The research team will try to identify patterns to understand the issues faced by people living with scleroderma, and ways to tackle them.
Every drug that is currently prescribed for scleroderma will have been through research studies to make sure that it works and is safe to use.
Finding clinical trials
To find clinical trials for scleroderma and Raynaud's, visit ClinicalTrials.Gov
To find a list of trials currently recruiting within the UK, use the search box and enter 'scleroderma' or 'Raynaud's'. By ticking the small box saying 'include only open studies', then clicking the tab 'On Map', and clicking the UK twice you will see a list of all the current clinical trials that are open for you to participate in within the UK.
Clinicaltrials.gov will show you all the trials in the UK but you may wish to limit this to certain locations that you are able to travel to. The UK Clinical Trials Gateway (now named Be A Part of Research) allows you to do just that, via Be A Part of Research.
Here you can search clinical trials for 'scleroderma' or 'Raynaud's' within a specific location .eg. Within 50 miles of Leeds.
Other links to find clinical trials:
How do I know if the study is useful and worth considering?
Most studies are reviewed by an independent scientific panel to make sure that they are well-designed and meet quality standards. Research carried out in the NHS must follow guidelines set out by the Research Governance Framework for Health and Social Care.
Once this scientific review has taken place, the research team then has to find money to fund the study. During this process, another independent review is carried out by the organisation that is considering awarding the grant to pay for the trial.
Do I have to get involved in research?
No-one has to take part in research. Your doctors and research team will understand if you do not want to. The care you receive will not be affected by your decision.
If you have some questions or concerns about what is involved, how it might affect you, how much time it will take and how you will get to the venue, speak to your health care or research team.
Will I get paid for participating? Will my benefits be affected?
Participants will often have their travel expenses paid. Some research organisations will also offer an additional payment to compensate for a participant's time and inconvenience. Before committing to taking part, ask the research team exactly what expenses and financial compensation will be offered.
Payments are normally tax exempt but if you are receiving benefits then check with your provider to see whether payments from clinical trials will affect them.