As a patient there are a number of ways to take part in TONiC. Firstly, we recommend you discuss your involvement in TONiC with your regular neurological team. They may well be involved in TONiC and might be able to assist you in taking part. If this is not the case however, do not worry. Please feel free to forward the website address to your neurological team. We welcome contact from neurological teams and will facilitate their involvement in the study. Even if your neurological team are not a recruiting centre, it is possible to forward clinical details to the nearest recruiting centre and then complete the questionnaires online or by post.
As a healthcare professional you may be eligible to take part in the Professionals’ Forum. Provided you are a qualified healthcare professional that works within the UK and have experience caring for patients with Multiple Sclerosis or Motor Neurone Disease, you are eligible. All that is needed is for you to go on to our “Professionals’ Forum” webpage and click the “Register for Professionals’ Forum” at the bottom of the page and follow the steps.
As a representative of a professional organisation you may find that our study is of particular relevance to your organisation members or professional body. TONiC is currently endorsed by numerous national organisations and charities and welcomes partnerships that will help to promote neurological health. If you feel that this study may be relevant to your members, please contact the TONiC team at email@example.com
Yes, it is possible to refer your patient to the TONiC study. You should contact the TONiC team at firstname.lastname@example.org. We encourage participation and will do our best to minimise the workload for you. We will require you to contact your nearest recruiting centre to refer the patient. The centre will facilitate completion of the necessary consents and questionnaires with the patient directly. The recruiting centre may ask you for some clinical details of the patient to confirm eligibility, but no further input should be required from you.
As a patient you will be expected to read information leaflets, decide if you wish to take part and if so, sign some consent forms to state you are happy to be involved in TONiC. You can complete the questionnaires online on a secure website or by post. Both are completed at home at your leisure. The questionnaires will ask you about different aspects of your quality of life, from symptoms you experience, to worries you have and how your condition impacts on your home environment. The questions within the packs will be personal but this is vital, for us to obtain a full picture of what is important to your quality of life. Importantly all the answers you give are anonymous and confidential, and ultimately may benefit the quality of life of all patients with neurological conditions. Additionally, if you have a carer or someone who understands your condition and you see them on a regular basis, they can also complete a questionnaire to explain how often you experience symptoms and the severity of your symptoms. This may be a friend or family member. If you decide not to take part, you can withdraw from the study at any point without having to state a reason why.
As a healthcare professional you will be expected to register via the “Register for Professionals’ Forum” link on our “Professionals’ Forum” webpage. You will then be asked to complete an online consent form and a form registering your professional details. You will then receive an e-mail each week with a link to the website informing you of the release of the next questionnaire. There will be 6 questionnaires in total, with each questionnaire lasting less than 5 minutes – with some lasting 2-3 minutes maximum. All information within the completed questionnaires and forms is kept completely confidential. The answers you give will help contribute to the development of quality of life models to be tested by patients later in the TONiC study.
The Professionals' Forum is looking for the input of qualified healthcare professionals working with patients with Multiple Sclerosis or Motor Neurone disease within the UK. If you have completed a diploma, vocational course or higher degree accepted by the NHS or your national representative body (e.g. British Dietetic Association, Royal College of Speech and Language Therapists) that enables you to practise within a multidisciplinary team or independently in rural areas, then you are eligible to take part.
No. Your regular care will continue under your current multidisciplinary team. The questionnaires to be completed for the study will be given to you either by your team, in the post or may be completed online, so your usual consultations will be unaffected.
No. All healthcare professionals recognise that participation in research studies is the choice of the patient. TONiC has been planned carefully and thoughtfully to ensure that there will be no interference with optimum treatment of your neurological condition.
The Professionals' Forum builds on groundwork carried out with patients, but does not involve patients directly. The role of the Forum is to incorporate the expertise of healthcare professionals from all over the UK into the development of our patient questionnaires and quality of life models. However, as a patient you may be eligible to be a part of the Patient Questionnaire stage of TONiC.
Yes. All your answers are treated in confidence. They are analysed anonymously. The results are presented as a group and it will not be possible to identify individuals. All answers and participant data is contained within a secure encrypted database.