Centre for Applied Health Research

GMMSIN Study information

Participant Information Sheet 
Greater Manchester Multiple Sclerosis Information Network (GMMSIN)  

This study has been reviewed and approved by the NHS Health and Social Care Research Ethics Committee

What is the purpose of this project?  

The purpose of this study is to evaluate a new online community for people recently diagnosed with Multiple Sclerosis (MS) that live in Greater Manchester, England called the Greater Manchester MS Information Network (or GMMSIN). This community has been developed by a collaboration of people living with MS, clinicians and researchers at the University of Salford. GMMSIN runs through a Facebook group for people living with MS in Greater Manchester, a website with local information and support, and information is also shared on YouTube. 

Why have I been invited to participate? 

You have been invited to participate in this study because you are a person living with Multiple Sclerosis in Greater Manchester, under the care of Manchester Centre for Clinical Neurosciences. 

What would I have to do if I agree to participate?  

Participation in GMMSIN includes joining and engaging with the GMMSIN Facebook group and completing 2-3 questionnaires to evaluate GMMSIN over the space of a year.   

Online Questionnaires 

Before joining GMMSIN you will need to complete the questionnaire that directly follows the consent form. The questionnaire should take up to 10 minutes to complete and asks about you and your feelings. You will later be asked to repeat a feedback questionnaire of the same length when GMMSIN has been running for 6 months and 12 months with some repeated questions. This is so we can see if being part of GMMSIN has had any impact on your answers.  

Join the GMMSIN hub  

You will become a member of a private GMMSIN Facebook group. The GMMSIN group will allow you access information from local clinicians and connect with other newly diagnosed people in Greater Manchester. You will be provided with a link to join the group after you complete the first questionnaire. When you join the group you will be asked to agree to our community rules to keep everyone safe online.  

We recommend you visit the group at least fortnightly for 12 months, but your usage is up to you. Posts and comments in the GMMSIN group may be used anonymously in the research to understand how people use GMMSIN and if it has value. If we use this data it will always be anonymous and we will never report anything that could identify you. GMMSIN also has a website and Instagram, TikTok and YouTube accounts. There is no requirement to use them, but they are there to give you extra ways to access information.  

What if I don’t know how to use Facebook/Don’t have access to a suitable device? 

Don’t worry if you are not currently familiar with Facebook we have short training videos [link to guidance on getting started with Facebook Groups page] on how to use Facebook, stay safe online and protect your privacy.  

If you would like to participate but don’t have a smartphone, tablet, laptop or computer to access GMMSIN please contact p.a.hepburn@salford.ac.uk  

What are the benefits to me if I participate in GMMSIN? 

Taking part in the group should be both enjoyable and beneficial to you. It may be a useful way to connect with other people who understand your condition, find support, ask questions and engage with local clinicians to find out more about managing your MS. 

Are there any risks to me if I participate? 

There are no risks directly associated with this project. GMMSIN should be a safe space,  however, if you have any concerns during the study you can contact the GMMSIN Facebook group moderators. The MS Society also offer an MS Helpline Freephone on +44 (0) 808 800 8000, in case you find yourself distressed at any point.

Do I have to participate? 

Participation in this study is voluntary. If you decide not to take part it will not impact the care you receive for your MS.  

What if I want to participate but I have access needs that make it difficult?  

If you would like to take part but are struggling to read/answer the questionnaire you can contact p.a.hepburn@salford.ac.uk and we can arrange an alternative way of you completing the consent form and questionnaire (e.g., during a phone call or video call with one of the research team where you tell us your answers and we record them for you).

How will my information be used?  

We will need to use information from you for this research project. This information will include some of your demographic details and your name and date of birth, alongside any information you choose to share as part of GMMSIN Facebook Group. The University of Salford Research team will use this information to evaluate the impact of GMMSIN and to make sure that the research is being done properly. The University of Salford is the sponsor of this research and is responsible for looking after your information. We will keep all information about you safe and secure by:  

  • Storing any infomation we have about you on secure UK GDPR compliant servers 
  • Making sure your answers will not be identifiable in any report or publication or be seen by anyone you work with.   
  • Your data will not be shared outside the UK. 

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study. We will keep your study data for a maximum of 5 years. The study data will then be fully anonymized and securely archived or destroyed. 

What are my choices about how my information is used? 

  • you can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have 
  • If you agree to take part but change your mind before completing the first questionnaire, simply close the window and you will not be included in the study. After this, if you wish to leave the study please contact Paul Hepburn via email at p.a.hepburn@salford.ac.uk.
  • You have the right to ask us to remove, change or delete data we hold about you for the purposes of the study. We might not always be able to do this if it means we cannot use your data to do the research. If so, we will tell you why we cannot do this.

Where can I find out more about how my information is used?  

You can find out more about how we use your information by:  

How will the project findings be published?  

A project report will be published in 2026 on this website. Publications about the project may be published in professional or peer reviewed journals.  The findings will also be communicated through social media. All publications will be written in a way that protects the identity and confidentiality of the people who participate. Anonymous data from the study may also be used for presentations and teaching purposes. 

Future research linked to GMMSIN 

We may be conducting additional research or activity in relation to the GMMSIN.  We will use the online community to provide you with further information, or if you indicate you are interested in other aspects of this research we will contact you directly for this purpose only.  Participation in the additional research will not be obligatory and your lack of participation in the additional research will not change your current experience of GMMSIN group participation or your MS care.  

What if I want to complain about how the project is being conducted?  

If you have a concern about any aspect of this study, you should ask to speak to the Principle Investigator Lead Prof. Alison Brettle A.Brettle@salford.ac.uk who will do their best to answer your questions.  

If the matter is still not resolved you can forward your concerns to Dr Graeme Sherriff, Chair of the School of Health and Society Research Ethics Approval Panel, University of Salford at g.sherriff@salford.ac.uk  

Join the study

Find out more about GMMSIN