Clinical trials are the most reliable way to find out which treatments work best for a specific condition. These studies are carefully designed to compare, traditionally, one treatment with another in a fair and controlled way to see which is more effective.
When there are no approved treatments for a condition, clinical trials may compare a promising new treatment with a placebo, a ‘dummy’ treatment with no active effect. This helps researchers clearly see whether the new treatment works better than no treatment at all.
Clinical trials can involve participants receiving a new treatment, such as a medication or physiotherapy. Others may test new ways to prevent disease (such as vaccines) or improve diagnosis using new tools or methods.
In addition to being placebo-controlled, many clinical trials are also:
- Double-blind – neither participants nor researchers know who is receiving the treatment or the placebo until the study ends
- Randomised – participants are randomly assigned to receive either the treatment or the placebo, rather than being selected or choosing themselves
Anyone can take part in a clinical trial, provided they meet the inclusion or eligibility criteria. These are specific requirements set for each study, so it’s important to review them before applying.
By taking part in or supporting clinical trials, you’ll be helping researchers find the most effective ways to manage the symptoms and impact of scleroderma and Raynaud’s – not just for today, but for the future too.
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 – e.g. within 50 miles of Leeds.
Examples of clinical trials currently recruiting in the UK
UPSIDE
Help Improve Treatments for Systemic Sclerosis! Join the UPSIDE study, a European research effort aiming to find the best treatment approach for diffuse cutaneous systemic sclerosis (dcSSc). If you’re aged 18-65, diagnosed within the last three years, and want to make a difference, talk to your rheumatologist about participating. Learn more at: www.upsidetrial.com.
HANDSOME
Many people with scleroderma experience hand stiffness and loss of function, but we still don’t fully understand why. The HANDSOME study aims to find out who’s at risk and how to improve care. Now recruiting at the Royal Free Hospital London – get in touch to learn more: [email protected].
How do I know if the study is useful and worth considering?
All 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.