Trials and Registries Unified Sign-up Tool for Equitable Discoveries
Why join Trusted?
Accelerating research, Transforming Care
More than 20 existing treatments can help people with MS. But we don’t know which treatment is best for each person. So sometimes the best treatment for that person is not picked first (or even at all).
Our mission: everyone is offered the right treatment, at the right time, first time. We can do this - and make countless other discoveries - by securely studying everyone’s MS information. But first we need your consent – through Trusted.
Exciting new treatments, including for progressive MS and repair, are being tested in trials. But many people miss out simply because they don’t hear about them. We can tell you which nearby trials you are eligible for, with no pressure to participate. But first we need your consent – through Trusted.
Reducing HealthCare Inequalities
Access to MS services, treatments and research is not fair. We already know that people from some ethnicities or who are poor or live far from an MS centre receive treatment later than others, risking preventable disability. Our UK-wide study, embedded within Trusted, will measure all healthcare inequalities, understand their causes and find sustainable solutions. It’s called Reducing Inequality Gaps in Healthcare and Trials (RIGHT-MS). But first we need your consent – through Trusted.
You can transform care and research for millions of people with multiple sclerosis – all by completing one Trusted form.
Impact
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TRUSTED BY OVER 3,000 PEOPLE
Trusted has tripled the number of UK contributors to the highest impact international registry, MSBase. This is enabling answers to countless previously unanswerable questions and helping to improve care.
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MATCHING YOU WITH RESEARCH
The Trusted Trial and Study Eligibility Checker and Notification Tool sped up trial recruitment by 71%. Ensuring more people have the opportunity to participate in research that matters to them.
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UNCOVERING UNFAIR CARE
People from 51 of the 56 groups known to experience healthcare inequalities have already joined Trusted. Early results show unequal and profoundly unfair care – for example, 74% of these groups face delayed diagnosis.
Why Me?
You're unique - your care should be too.
When treatments are recommended, we use averages to predict their benefits and risks. “This treatment reduces fatigue by 31%”. But in reality, some people will experience 90% less fatigue on that drug, while others just get side effects. This is not good enough.
We already know that some things change how MS affects people and how well a treatment will work (for example age or MS stage). But many things remain unknown. If we study everyone’s MS information, we can discover these missing pieces, and then accurately predict the benefits and risks of different treatments for each person.
Put another way, why do we need you? To accelerate personalised care for you – and others like you.
What does joining Trusted involve?
By completing one short, secure Trusted form you can transform one (or more) areas of research:
Help researchers understand MS and its optimal treatment by agreeing to your health information being studied at your care centre or in secure registries (UK MS Register, MSBase and MS Pregnancy Register).
You can receive information about clinical trials you may be eligible for, with no pressure to participate.Help reduce healthcare inequalities
You will need no extra appointments, tests or treatments (unless you choose to join a trial).
Who can join Trusted?
Anyone in the UK who has been diagnosed with (or is at risk of):
Multiple sclerosis (MS) or
Neuromyelitis optica (NMO) or
MOG antibody-associated disease (MOGAD) or
Myasthenia gravis (MG)
If you are unsure, please get in touch here.
How to join Trusted?
Your family or friends can help you to sign up, or one of the Trusted team can call you back to complete the form together over the phone.
You can sign up without your care team (you only need your NHS number). We can answer any questions, but feel free to ask your team if you prefer.
Is my information secure?
Yes. Your privacy is our priority.
We never share your name, date of birth, contact details or other identifiable information. Ever. Even if you’re eligible for a trial, we send you the trial information sheet and give you the trial contact details (not the other way around).
We never share information with employers or government bodies e.g. PIP, insurers, DVLA or Universal Credit.
You will never be identifiable in publications.
Participating Centres
Can’t see your site listed on the map? Get in touch here!
Trusted is supported by
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Multiple Sclerosis Society
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Multiple Sclerosis Trust
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Asian MS
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The Nerve of My MS
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MS Together
The Trusted Team
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Dr William Brown
Chief Investigator, Trusted
Consultant Neurologist, Cambridge University Hospitals NHS Foundation Trust
Senior Research Associate & NIHR Advanced Fellow, University of Cambridge
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Professor Alasdair Coles
Co-investigator, Trusted
Professor of Neuroimmunology, University of Cambridge.
Honorary Consultant Neurologist, Cambridge University Hospitals NHS Foundation Trust
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Professor Carol Brayne
Co-investigator, Trusted
Professor of Public Health Medicine, University of Cambridge
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Dr Cheryl Hemingway
Paediatrics Lead, Trusted
Consultant Paediatric Neurologist, Great Ormond Street Hospital
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Professor Rod Middleton
IT Architect, Trusted.
Principal Investigator of the United Kingdom MS Register,
Associate Professor of Disease Registers and Data Research
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Dr Adam Loveday
Research & Development representative, Trusted.
Data and AI Research Governance Lead
Cambridge University Hospitals NHS Foundation Trust
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Michelle Ellerbeck
Data Custodian, Trusted
Information governance lead/Data Protection Officer, Cambridge University Hospitals NHS Foundation Trust
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Toni Bray
Clinical Research Manager, Trusted, University of Cambridge
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Jacky Porter
Clinical Research Manager, Trusted, Cambridge University Hospitals
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Sam Grant
Participation Assistant, Trusted, Cambridge University Hospitals
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Maria Sanfilippo
Participation Assistant, Trusted, Cambridge University Hospitals
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Debbie Morrall
Participation Assistant, Trusted, Cambridge University Hospitals
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Nosson Almeida
Participation Assistant, Trusted, Cambridge University Hospitals
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Keith Logan
Participation Assistant, Trusted, Cambridge University Hospitals
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Magdalena Dragan
Participation Assistant, Trusted, Cambridge University Hospitals
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Nadira Fernando
Participation Assistant, Trusted, Cambridge University Hospitals
FREQUENTLY ASKED QUESTIONS
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It is up to you to decide whether to take part in Trusted. You can choose to contribute to none, one, or more, parts of Trusted.
If you choose not to take part or withdraw at a later stage, it will not affect your care or treatment in any way.
Once you withdraw, any identifiable information will be removed (where it is held), and your information will not be added to any new registries that join Trusted. However, any existing de-identified information will be retained.
If you later decide to participate again in Trusted, simply contact us.
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There are no direct benefits to you for taking part in this study.
We hope that the information collected for the registries will help us to better understand neuroimmunological conditions such as multiple sclerosis (MS) neuromyelitis optica (NMO), anti-MOG associated disease, and myasthenia gravis (MG) and lead to improvements in quality of care.
While we hope that clinical trials may lead to benefits, these are not guaranteed.
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By contributing your information to multiple registries, you will help increase the number of people in these registries, enabling important research questions to be answered more quickly and with greater confidence.
It will also ensure better representation of people with neuroimmunological conditions from the UK in international research, making sure the results of their studies are relevant and beneficial to people in the UK.
Trusted is also a Trial and Study Eligibility Checker and Notification Tool, enabling you to hear about relevant trials and sign up to what matters most to you.
Your participation will have a lasting impact on improving research and treatments for neuroimmunological conditions.
“Trusted recognises that there is no ‘one-size-fits-all’ approach to clinical research.
Instead, it empowers people living with multiple sclerosis to join the studies that most interest them.
When participants are invested, the potential for meaningful outcomes are greatly increased.”
DR WILL BROWN, CHIEF INVESTIGATOR
CAMBRIDGE CLINICAL MULTIPLE SCLEROSIS RESEARCH GROUP