Since being hit by a motorbike travelling at high speed and nearly losing my life or independence I now have personal experience of the value of physical neurorehabilitation. When I say #UseItOrLoseIt I really mean it. So if you have more advanced MS and are using a walking stick (EDSS 6.0) we want you to enrol in a #CitizenScience type study in which we are testing a new hand and arm activity called Under&Over to see if it can improve or maintain upper limb function. The study is titled: “Under & Over: A controlled study to develop an upper limb rehabilitation tool for people with Multiple Sclerosis.”
The Under&Over project is an extension of our #ThinkHand campaign, i.e. you are never too disabled to be treated with DMT and we are doing the O’HAND (ORATORIO-HAND) and CHARIOT-MS studies to test ocrelizumab and oral cladribine in people with more advanced MS with the primary outcome being the 9-hole peg test; an outcome measure of upper limb function. Under&Over is simply a form of upper limb exercise. However, to get the MS community to accept arm and hand rehabilitation as a treatment we need evidence from a controlled study. So without volunteers, without you, we won’t be able to generate the evidence to prove that we can protect upper limb function with exercise.
This study is now recruiting – find out more information on the study website.
This is part of our ThinkHand project which addresses the need for more resources, research and services to support upper limb function.
What is the purpose of the study?
The research is designed to find out whether repeated use of the Under & Over tool (pictured above) can improve upper limb function in people with MS. It is also designed to gather information about the long term use of the tool based on participants’ experiences and the use of a digital platform and community integration to support this.
Who can take part?
Men and women over 18 years can take part if:
- You have a diagnosis of MS (more than 6 months)
- You have internet access
- You have an Expanded Disability Status Scale (EDSS) score of ≥6 as measured using the online WebEDSS
- You understand and able to communicate in English
You will not be Eligible to take part if:
- You are unable to use your hands because of pain or any other reason that might interfere with your ability to complete the intervention using the Under & Over device.
It is a fully remote study, so there are no clinical visits or examinations. All study resources are online or will be posted to your home. You just need to live in the UK.
A number of baseline questionnaires will gather initial data that we will compare with the same data gathered at the end of the study (cardboard 9 Hole Peg test, WebEDSS, ABILHAND questionnaire, MSIF and MSIS-29).
Following baseline assessments, everyone who agrees to take part in this study will be randomly assigned to one of two groups; one group will receive immediate intervention and the other group will receive the delayed intervention; this is called the wait-list control group. This means that they will receive access to the rehabilitation programme after a 3-month period. This way everyone who participates in the study will eventually get access to the rehabilitation programme.
Contact for further information about the study:
If you would like further information, answer to any questions or queries and would like to express interest to take part please contact the Under & Over Research Team (firstname.lastname@example.org) and read the participant information on the study website.