Today, we’re diving into a topic that sparks interest for many – but is often accompanied by uncertainty or hesitation: clinical trials.
For people living with chronic, immune-mediated conditions like Multiple Sclerosis (MS), Neuromyelitis Optica Spectrum Disorder (NMOSD), or MOG Antibody Disease (MOGAD), clinical trials can represent hope – hope for new treatment options, improved quality of life, and potentially even steps toward a cure.
But it’s completely natural to have questions or concerns – or to feel like there just isn’t enough clear information available.
My goal is to help you feel more confident about this subject.
I’ll walk you through what clinical trials are really about, why they can be especially valuable for people with MS, NMOSD, and MOGAD – and how trustworthy information can help reduce fear and support informed, empowered decisions.
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Why I’m Talking About Clinical Trials
I chose to speak about clinical trials because I truly believe they offer great opportunities for people like us – whether we’re living with Multiple Sclerosis (MS), NMOSD, or MOGAD. While some of what I say refers specifically to MS, many of these thoughts and concerns apply just as much to other neuroimmunological conditions.
Especially in cases of so-called smouldering MS – that slow, progressive worsening independent of relapses – we urgently need more treatment options. Even for relapsing forms of MS, there’s still room for improvement. More targeted, better-tolerated medications would be a real step forward.
And of course, we’re also looking ahead: regenerative approaches, like those aiming to promote remyelination, carry enormous potential and hope.
I used to be afraid of clinical trials myself. Today, I feel much more at ease – largely thanks to what I’ve learned through my studies in MS management and my participation in the EUPATI-program.
For those who don’t know: EUPATI is a training initiative for patients, aimed at building a network of patient experts who actively contribute to the development of clinical trials – and to broader health system decisions, such as benefit assessments for new medications, medical devices, or diagnostic tools.
For several years now, I’ve been participating in non-interventional studies – studies that don’t test medications, but investigate scientific questions like how best to detect subtle disease progression, or how to evaluate potential medication-related risks during pregnancy.
And honestly, if my disease course ever changed, I could imagine taking part in a medication trial – provided something suitable were available and I met the inclusion criteria.
MS Clinical Trials: How Open Are Patients Worldwide – and Why Participation Matters
For people living with Multiple Sclerosis (MS), clinical trials offer a valuable opportunity: early access to innovative therapies while actively contributing to medical progress.
But how willing are patients around the world to take part in these studies? And how much does your location influence that decision?
The motivation to participate in clinical trials varies greatly across countries and cultures:
In places like the United States or Scandinavia, clinical trials are often a natural part of chronic disease management. People tend to be open to medical innovation, and trial access is well structured – supported by digital patient registries and close collaboration with healthcare providers.
In parts of Eastern Europe, Asia, or South America, clinical trials may be the only way for people with MS to access modern treatments free of charge. Here, clinical research plays a dual role – not only advancing science but also bridging gaps in healthcare access.
In countries with strong healthcare systems – such as Germany – interest in clinical trials tends to be more cautious. Although the quality of research is high, many patients are simply unaware that participation is even an option, or they hesitate due to a lack of accessible information.
No matter where you live, it’s worth exploring what clinical trials might be available. Taking part can offer medical benefits, but also something more: the feeling of contributing to a larger goal – the ongoing progress toward better treatments for everyone living with MS.
What Does “Education” Really Mean?
When I talk about education, I don’t just mean handing out brochures or pages of fine print.
For me, good education means clarity and transparency – especially when it comes to safety.
What has already been tested before the study even begins?
What are the potential benefits – and what are the risks?
What side effects could occur, and what safety measures are in place to protect participants?
People need clear, understandable information – not endless medical jargon or legal language. And ideally, this should be available in flexible formats like podcasts or videos that are easy to access and digest.
It’s also important to have low-threshold options to ask questions – for example, through a patient advocate or an MS nurse who can respond not just to medical concerns, but also to emotional ones.
Trust – The Key Ingredient
Trust is essential. I want to be seen as a person, not just as a participant.
Having a familiar contact at the study center, open communication, and the reassurance that I won’t be left alone if I have questions or concerns – that makes a real difference.
What helps build trust?
Success stories. When I see how past clinical trials have led to better treatments for MS, it boosts my confidence.
And knowing how many layers of testing a drug goes through before it ever reaches people – that’s incredibly reassuring.
What Goes Through Your Mind Before Joining a Clinical Trial?
Let’s be honest – it’s an emotional rollercoaster.
There’s hope and curiosity, but also fear and uncertainty.
What if the medication doesn’t work?
What if I get the placebo and my MS keeps progressing?
Here’s some good news: pure placebo groups without active treatment have become rare in MS trials.
Most studies today compare a new treatment against an approved standard therapy. Placebos may still be used – but if that’s the case in a trial you’re considering, make sure to ask exactly what happens if your MS worsens while on placebo. There are usually protocols in place to monitor and protect participants.
Also important to know: leaving a study doesn’t necessarily mean putting yourself at risk. But always discuss this with your doctors, study nurses, or MS specialists. You don’t want to drop out prematurely and regret it later.
And of course, you’re never obligated to stay in a study until the end. Some participants do leave early – that’s expected. Interestingly, in trials that show good results, the dropout rate is often much lower, because participants feel the treatment is helping.
Some key questions to ask before joining:
How time-consuming are the check-ups and procedures?
Will this impact my daily routine, job, family, or energy levels?
Thinking ahead makes it easier to decide whether a study is truly a good fit for you.
Common Barriers – and How We Might Overcome Them
What often holds people back from participating in clinical trials:
The time commitment involved
Fear of receiving a placebo
Worry that MS may progress without an effective treatment
Concerns about side effects, frequent procedures, or demanding study protocols
Work responsibilities, family planning, or long travel distances to study centers
✅ What could help lower these barriers:
A trusting relationship with the medical team – sometimes one extra conversation can make all the difference
A patient advocate or representative who provides guidance on equal footing and offers emotional support
Simplified procedures, such as digital symptom diaries or decentralized visits (though these may not always be feasible)
Coverage of costs like transportation (e.g. taxis) or childcare – but this needs to be clearly defined and approved before the study begins
Fair compensation for lost work time – although this is only allowed in some regions, as it may otherwise be seen as undue incentive
Opportunities – For You and For Others
Taking part in a clinical trial can offer several meaningful benefits:
Early access to innovative therapies
Closer monitoring of your condition through regular, detailed check-ups
The chance to contribute to better treatment options for the future
And perhaps most importantly: the hope that regenerative approaches – such as remyelination – could one day improve symptoms or even help restore lost functions
By participating, you’re not only helping yourself – you’re helping the entire MS community move forward.
What Makes Research “Good”?
To me, a clinical study is well-designed and meaningful when:
It handles risks and benefits transparently
The mechanism of action is explained in a way patients can understand
Safety protocols and monitoring are clearly communicated
Patient voices are taken seriously – for example, through Patient-Reported Outcomes (PROMs), which help track how participants themselves perceive their health during and after treatment
And ethics is key. I believe that:
Today’s studies are conducted with high safety standards
Research must continue – especially for progressive forms of MS
And most importantly: we as patients deserve a seat at the table – to help shape the future of research as active contributors
My Takeaway – And Your First Step
Here’s what I want you to take away:
Clinical trials can be a real opportunity – for you personally and for the entire MS community.
If you’re feeling unsure about your current treatment, looking for new options, or simply curious, don’t hesitate to ask questions.
Talk to your healthcare team or start exploring on your own – through platforms like ClinicalTrials.gov (worldwide), the EUClinicalTrials.eu (Europe), or even using tools like AI to support your search.
You only have one life and one body. And sometimes, it’s better to take action than to wait for someone else to come up with the answers.
Whether you’re living with MS, NMOSD, or MOGAD:
Use your right to information, connect with people you trust – and find out whether a clinical trial could be the right path for you.
It’s your body, your decision – and it’s perfectly okay to be curious.
What’s Next?
Clinical trials are a topic close to my heart, and this is just the beginning.
I’ll be sharing more content on this in the future.
If you’ve taken part in a clinical trial for Multiple Sclerosis, NMOSD, or MOGAD – or are currently enrolled – and would like to share your experience, I’d love to hear from you.
Your personal story could help others better understand what it’s really like to participate.
Feel free to reach out – I truly welcome your perspective.
Using AI to Help You Navigate Clinical Trial Searches
Let’s be honest: both major trial databases – ClinicalTrials.gov (worldwide) and CTIS (Europe) – can be difficult to use, especially for the average patient, regardless of the condition.
But AI can help.
You can use an AI assistant to simplify complex medical language, guide you through how to fill out the search filters, or even help you input your diagnosis (anonymously) and ask:
👉 “Which fields should I select to find currently recruiting trials that might be relevant for me?”
👉 “How do I check whether I meet the inclusion and exclusion criteria based on my health status?”
That said, keep in mind: AI tools can make mistakes or generate inaccurate information (so-called “hallucinations”).
Always follow up by contacting the listed study site or research coordinator directly for confirmation and more detailed guidance.
See you soon and try to make the best out of your life,
Nele
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