Participating in research

Date: Tue 12th February 2019

A clinical trial is the best way we have of finding out which treatments work for a particular condition. Clinical trials compare one treatment against another in the fairest way possible, to find out which one works the best. If there are no approved treatments for a condition, a trial may compare a potential treatment to a placebo – a dummy 'treatment'.

Anyone can take part in a clinical trial as long as they meet the inclusion/eligibility criteria. It is important to check these criteria before applying to join a trial to ensure you are eligible to take park.

By supporting trials, you will be helping to find the best treatments possible to manage the symptoms and effects of Scleroderma & Raynaud's.

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.

There are three types of research studies: observational, interventional and qualitative

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

Interventional

Interventional studies involve receiving a new treatment, for example, physiotherapy or a 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 chose whether the patient gets the real treatment or the placebo

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 on 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.

Finding Clinical Trials

To find clinical trials for scleroderma and Raynaud's you can use www.clinicaltrials.gov.

To find a list of trials currently recruiting in 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.

The NIH's Clinical Trials website, although it is a US government portal, 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. You can do this by entering in your town or city and the distance of which you are willing to travel to. Alternatively, you can access The UK Clinical Trails Gateway on www.ukctg.nihr.ac.uk.

Here you can also search clinical trials for 'scleroderma' or 'Raynaud's' within a specific location, e.g. within 50 miles of Leeds.

You can also check our own list of trials funded by SRUK to see if there are any that are currently accepting participants here.