Take part

Clinical surveys

If you would like to take part in a clinical survey, current ones are listed below:

The impact of altered appearance on intimacy

Many people live with conditions that cause disfigurement or lead to changes in their appearance, which can have an impact on their quality of life. In order to provide appropriate support, it is important for doctors, nurses, psychologists and researchers to understand the nature and extent of this impact. At the moment relatively little is known about how visible differences may affect close intimate relationships and what proportion of people with a visible difference experience difficulties in this area.

A series of questionnaires has therefore been developed relating to visible difference, intimacy and sexual activity, being evaluated by others and their related thoughts, feelings, experiences and behaviours. The results of the study will be used to test, refine and shorten the questionnaires to produce a scale that be can be used to find out whether a person is having appearance-related difficulties with intimacy and can also be used for research purposes.

The results of the study will be published to improve healthcare and research professionals' understanding of the area. The results will also be used to test, refine and shorten the questionnaire that we have developed so that we know which questions are most useful for researchers and clinicians so that they may measure the impact of visible differences upon intimate relationships and provide suitable support.

If you are interested in taking part, you can find out more online at tinyurl.com/intimacyCAR or you can contact Nick Sharratt for additional information, if you would like a hard copy of the questionnaires or require any assistance in completing them.

Recruitment period: TBC

Trial location: Home-based (online or paper questionnaire)

Contact: Nick Sharratt, PhD Researcher, Centre for Appearance Research, University of the West of England

E-mail: nick.sharratt@uwe.ac.uk, 0117 328 1891

Future fashion: assistive clothing for Raynaud's

Clothing is an integral part of our lives and yet if you have difficulties putting on or taking off garments, struggle to stay warm or need additional physical support, every day can prove challenging. With Raynaud's it can be difficult to prevent your extremities from getting cold, and research has led to the use of insulated lining and fabric containing silver, which keep more heat in/prevent heat loss and can prevent or reduce the severity of attacks.

To gain a better understanding of the difficulties associated with living with Raynaud's and several other conditions, including diabetes and arthritis, research is being carried out at Nottingham Trent University into supporting these hidden disabilities through textile developments. Lisa Shawgi is a PhD student with a history of designing fashion wear who is currently developing 'assistive/therapeutic' clothing. As someone living with secondary Raynaud's, this is an area of research particularly close to Lisa's heart and she is keen to include the Raynaud's community. Participants will be invited to take part in structured discussions and/or workshop between July 2017 and March 2018. If you are interested in taking part, you can email her or call her on 07507 265332 (Monday to Friday between 9am and 5pm).

Recruitment period: Summer 2017 – February 2018

Trial location: School of Architecture, Design and the Built Environment, Nottingham Trent University

Contact: Lisa Shawgi, PhD Researcher

Email: lisa.shawgi2015@my.ntu.ac.uk, lisashawgi@gmail.com, 07507 265332

Information and education for children whose parents or grandparents have chronic rheumatic conditions

People with long-term rheumatic conditions, like Raynaud's and scleroderma, are often given leaflets to read about their condition. These leaflets try to answer some of the questions they, and their family, might ask.

At the moment there is no information available specifically for the children or grandchildren of people who have long-term rheumatic conditions. We are carrying out a research project to find out if people think it would be a good idea to provide this information for children, written in a way that they would understand. We would also like to know the best way to provide this information, and when. The project is funded by Arthritis Research UK and The Dudley Group NHS Foundation Trust Charitable Fund.

Take the survey

The survey takes five to ten minutes to complete and you can reply anonymously. Some of the questions ask you to write an answer in your own words. When we write a report on this research project we may quote some of these statements. As we do not ask you for your name we will do everything we can to protect your confidentiality. If you do mention someone or a place by name, we will change this or delete it so that it will be very difficult for anyone to identify you.

For further information, contact the research team:

Ms Elizabeth Hale
Department of Rheumatology,
Clinical Research Unit,
North Wing,
The Dudley group of Hospitals NHS Foundation Trust,
Russells Hall Hospital,
Dudley DY1 2HQ

Tel: 01384 456111 extension 3722 (an answer machine is available)

OR

Mr Ben Watkins: 01384 456111 extension 1890.

Recruitment period: TBC

Trial location: Home-based (online)

Contact:

Elizabeth Hale, 01384 456111 extension 3722

Ben Watkins, 01384 456111 extension 1890.

Observational study

Taking part in an observational trial conducted by SRUK and one of our product partners is a great way to get involved in our work and help promote medical understanding of scleroderma and Raynaud's.

The trials are usually run by research groups on behalf of pharmaceutical companies, in conjunction with SRUK. They often consist of an interview and then a follow up study of some sort, for example a diary or a request to trial an activity.

These studies help companies decide if a certain treatment or piece of equipment will work, or if further trial activity is needed. They also help companies spot gaps where further support may be required.

There is often criteria attached to this type of study, but should you qualify you are usually compensated for your time and effort.

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