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Information for patients
Please see the About Us section for general details of the study.
This section is to provide more detail to patients about why we are conducting this study and how it may benefit you and the SMA community. As well as providing an overview of the regulations required for research, an estimated timeline of the study and how you can get involved. With links to some of the amazing SMA patient organisations who are all fighting together for a cure for SMA.
What are the benefits of taking part in this study?
By taking part in this study, you will be sharing with us incredibly valuable data which will help us see the long-term disease progression, overall effects of current treatments and standards of care for SMA. We hope this can lead to a better understanding of the disease and updates in the standards of care.
Estimated Timeline of the Study Duration
The Adult SMA REACH contract was made in 2020, the first site was activated in 2022.
Our contract has been extended until 2025.
What are the Regulations for This Study?
All research studies must adhere to strict policies, standards and legislation to ensure the rights, safety and welfare of study participants are protected and to establish the credibility and reliability of study data; ensuring an overall standard of ethical and scientific quality.
The policies, standards and legislation that apply to research and clinical trials are:
Data Protection and Information Governance
Research
Ethics
Committees
UK Policy Framework for Health and Social Care Research
International Conference on Harmonisation for Good Clinical Practice (ICHGCP)
Health Research Authority (HRA)
All organisations conducting research must demonstrate they have the relevant approvals in place before commencing any research activity. All staff involved in research must have of the all applicable trainings in place, prior to commencement, to ensure the rights, safety and welfare of study participants and the integrity of the research.
The National Institute for Health and Care Research (NIHR) was established in 2006 to create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading edge research focused on the needs of patients and the public. Funded by the Department of Health and Social Care, the NIHR works in partnership with the NHS, universities, local government, other research funders, patients and the public, we fund, enable and deliver world-leading health and social care research that improves people’s health and wellbeing and promotes economic growth.
Adult SMA REACH is an observational research study collecting longitudinal data on participants aged ≥ 16 Years’ of age with a genetic diagnosis of 5q Spinal Muscular Atrophy (SMA).
The research study has been reviewed and given ethical approval from the North East – York Research Ethics Committee. Adult SMA REACH is also NIHR Portfolio Adopted, with a Central Portfolio Management System ID of: 49675.
If you are interested in participating in Adult SMA REACH or would like more information, your local treating centre will provide you with all relevant documentation to allow you to make an informed decision regarding participation.
How do I get involved?
If you are interested in taking part in this study, please contact your local participating site – find a map of participating sites on the Our Network page.
SMA-related Patient Organisations
Here a few of the main UK SMA-related patient organisations, globally there are many other patient organisations, our Ongoing Research section details more amazing SMA related organisations.
Muscular Dystrophy UK
