Patients

It can be hard to know whether you can trust information that you find on the internet. We recommend the following sites that provide reliable information to patients:

• Versus Arthritis is the largest UK charity that serves the needs of people who have rheumatic conditions. On their website you can find useful information on each condition and how it is  treated. They also have a free helpline available Mon-Fri 9am-8pm at 0800 5200 520.
• The NHS has a comprehensive website that provides general information about health conditions and treatment.
• Being diagnosed with a rheumatic disease can be a confusing and difficult time for many patients. Clinic appointments can seem rushed with a lot of information being given in a short period of time. The EdRheum website was designed by Dr Gray and colleagues at the University of Edinburgh to help patients feel more in control of their condition so that they could make informed choices.

There are many organisations that focus on specific conditions. Some of these have websites that are shown below:

The National Rheumatoid Arthritis Society (NRAS) runs a free helpline (0800 298 7650), provides information, and runs local support groups – if you want to find out if there is a group near you then you can contact NRAS by phone (01698 823 524), email at enquiries@nras.org.uk or look here.

National Axial Spondyloarthritis Society (NASS)

The Scottish Society for Rheumatology is committed to supporting research that reflects the needs and priorities of people with rheumatic diseases (like arthritis). Many people with arthritis from across Scotland are already involved in research projects – you can find out about some of them at the Scottish Collaborative Arthritis Research network site. 

Volunteering to take part in a project

There may be a research project that is recruiting participants, and is suitable for you. Usually, your local rheumatology clinical team will let you know about research (but you can also ask them directly). Occasionally, there may be projects that you can volunteer for directly, and then we will list information and contact details below.

Scottish Health Research Register (SHARE)

SHARE is a partnership between the NHS, government and universities in Scotland to develop a research register of people living in Scotland who are interested in helping with medical research. Over 200,000 people have registered so far and this is growing each day. You can find out more here.

Patient and Public Involvement

In order to ensure that our research is relevant to patients, we appreciate help from patients, relatives and carers. There are several Patient & Public Involvement (PPI) groups in Scotland who are looking for volunteers to join them.

What do members of PPI groups do? 

Members are enthusiastic individuals who engage with researchers to help in many ways. Each person’s involvement is based on their preference and can take many forms including: joining workshops, focus groups, or study teams; reviewing funding applications, designing information sheets and helping to share the results of research. Members can decide how much or how little they wish to get involved.

Where can I find out more about public involvement in research?

Further information about what is public involvement in research is available on the INVOLVE website

How can I get involved?

It does not matter where you live - even if you do not live close to any of the main research centres in Scotland, there are lots of things that you could help with from the comfort of your own home.

Glasgow

The Glasgow Arthritis Involvement Network (GAIN) works with researchers based in the University of Glasgow. If you would like more information on GAIN please contact:

Claire Wright
GAIN Manager
Institute of Infection, Immunity and Inflammation
Sir Graeme Davies Building, 120 University Place
University of Glasgow G12 8TA
Telephone: 0141 330 5620
Email:  GAIN@glasgow.ac.uk

Aberdeen 

The Aberdeen Centre for Arthritis and Musculoskeletal Health (ACAMH) works closely with members of the public, patients, carers and individuals with lived experience of MSK conditions. Our programme of  research is focused on rheumatic and musculoskeletal conditions. We have PPI groups set up as part of a number of our ongoing studies (https://www.abdn.ac.uk/iahs/research/epidemiology/research-107.php).   

To find out more about getting involved click the following link: https://www.abdn.ac.uk/iahs/research/epidemiology/opportunities-154.php

Edinburgh

Details to follow