Dupuytren's in society

We are working together with researchers at Keele University to find out more about Dupuytren’s disease in the community – how it progresses and the impact it has on daily life. Very little is known about this because patients with early disease are not routinely seen in hand clinics.

We hope the results of this study will tell us more about how many people in the community have Dupuytren’s disease, and how likely this is to progress. We also want to develop a method for people to easily self-monitor their hands at home.

We are currently recruiting people with Dupuytren’s disease to take part. If you have Dupuytren’s disease at any stage, and might be interested in taking part then please read the following information:

 

What do I need to do if I take part?

Taking part means completing a short questionnaire and consent form and returning them to us. The questionnaire should take less than 5 minutes to complete. We would also like you to send us a digital photo of your affected hand(s)—either by email or text.

To receive a Study Pack containing all the paperwork and a freepost envelope, please contact the DISCO Team:

Tel: 01865 612 610                              Email: ridd.research@nhs.net

If you take part we will contact you again in 6 and 12 months’ time and ask you to complete another short questionnaire and send a new photo.

 

Do I have to take part?

No, you do not have to take part in the study – it is your choice whether to return the questionnaire. If you decide not to take part it will not affect your medical treatment at your GP practice or elsewhere.

 

What are the possible benefits of taking part?

Taking part in the study will help us understand the impact of Dupuytren’s disease in the community and how it progresses, but it will not have any direct benefits to you as a patient.

 

What are the possible risks of taking part?

Taking part in the study does not involve any risk to you.

 

Will my taking part in this study be kept confidential and how long will data be stored for?

All answers you provide in the questionnaire will be kept strictly confidential. Members of staff from regulatory departments may require access to your records to check that the research has been carried out to a high standard. Each questionnaire and photo will be assigned a study number, and any identifiable information, such as your name and address, will be stored separately in a secure place. We will keep a password protected electronic file which links your study number with your name so we can make sure questionnaires and photos we receive at 6 and 12 months are given the correct study number. This linking file will be destroyed at the end of the study. All identifiable personal information will be destroyed at the end of the study unless you agree for us to contact you again for future research. This will ensure that personal data will not be stored for longer than is necessary (Data Protection Act 1998). The anonymised questionnaire answers and anonymised photos may be stored indefinitely—it will not be possible to identify you once the linking file is destroyed.

 

What will happen if I don’t want to carry on with this study?

You can withdraw from this study at any stage by contacting the DISCO Team. Withdrawing means we will no longer contact you, but we would still keep and use the information you have provided up to the point of your withdrawal.

 

What will happen to the results of the research study?

The main findings from the study will help us understand more about Dupuytren’s disease and how it can be monitored in the community. The results may be published in medical journals, reports, on websites, in newsletters and presented at conferences. All data presented will always be non-identifiable.

 

Who is funding and organising the research?

The research is funded by a NIHR Research Professorship, the Arthritis Research UK Primary Care Centre and the British Society for Surgery of the Hand, and organised by Keele University and the University of Oxford.

 

Who has reviewed the study?

The Proportionate Review Sub-committee of the East of England – Essex Research Ethics Committee has reviewed this study (Research Ethics Committee Reference Number: 16/EE/0349).

 

Contact for further information

If you have any questions, or would like further information about this study, please contact the DISCO Team:

Tel: 01865 737 977                              Email: ridd@kennedy.ox.ac.uk

Address: DISCO Team c/o Cathy Ball, Kennedy Institute of Rheumatology, NDORMS, University of Oxford, Old Road Campus, OX3 7FY

 

For independent general advice about taking part in research studies please contact INVOLVE:

http://www.invo.org.uk/                               Tel: 02380 651088                    Email: admin@invo.org.uk