The missing datasheet in MS: the risk of the disease itself

Summary

The concepts and arguments in this article use multiple sclerosis (MS) as an example (I have had it for 35 years), but they can be applied across many diseases.

MS patients are handed detailed, formalised information about the risks of taking a drug and vague, inconsistent, information about the risks of leaving the disease untreated or undertreated. This opinion piece argues that the imbalance distorts decision-making, often in the direction of delay, and that the usual justification (not wanting to frighten people) makes the problem worse.

It asks who is actually placed to assemble long-term comparative data on delayed and low-efficacy treatment, names registries and industry as the candidates, and sets out what a patient-facing 'disease risk sheet' would need to contain. Speculation is labelled as such. It ends with a direct challenge to anyone working in MS research, registries, charities or industry to say whether such a dataset already exists.

Read it if you work on treatment decision support, risk communication or registry outputs, or if you want the case for why the current comparison is not a fair one.

This article was first published on LinkedIn on 14 January 2026.

Content

MS medicines, any medicines in fact, come with leaflets that can leave a patient feeling frightened. The risks are real. Patients deserve clear and honest information.

But there is a problem in how the risk of not treating effectively or doing nothing is communicated in MS. We describe medicine risks in detail because we are required to. We do not describe the risks of poorly treated or uncontrolled MS with the same clarity or consistency. That imbalance disadvantages patients. The most common reason I have heard is variations of, "I don’t want to scare the patient."

The comparison patients are trying to make

Most patients are not asking, “Do I want a DMT, yes or no?” They want what they perceive the least harmful disease modifying therapy (DMT).

Instead, what they should be asking is, “What is the trade-off between treatment risk and the risk of irreversible neurological loss if I delay effective control?” This rarely happens and there is a reason.

Right now, patients are asked to compare two very different types of information:

• Treatment risks are listed, categorised, and presented formally.

• Disease risks are often poorly described in broad terms and without numbers or concrete examples people can use. There is additional variability depending on who is communicating this.

We have fragments of evidence and partial answers. We do not have a patient-ready dataset that answers basic questions such as:

• What happens, on average, if MS is untreated for two, five or ten years?

• What happens if MS is undertreated for years; for example, by staying on a low-efficacy option despite ongoing disease activity?

• How does that choice translate into outcomes people actually experience, such as walking, hand function, vision, bladder and bowel function, cognition, fatigue, work and independence?

My view from inside the system

I speak regularly with clinicians, researchers and people involved in MS studies and services. If a clean, widely usable 'disease risk sheet' existed, one that patients could use in clinic and clinicians could rely on, it would be discussed constantly because it would change everyday decision-making.

In my experience, it is not there.

That does not mean no one has ever captured elements of it. It means it does not exist in a form that patients can use at the point they are making decisions, when fear can dominate the conversation.

Who could have this data?

I want to be careful here. I am not accusing any company. I am not claiming a hidden dataset exists. I am asking who is best placed, in practice, to assemble long-term comparative data at scale.

Two candidates stand out:

• MS registries Registries hold large amounts of real-world information. In principle, they can help reconstruct trajectories, including delayed treatment, treatment gaps, switching, escalation and long-term outcomes. But that work needs funding, consistent definitions, and a clear mandate to produce patient-facing outputs, not only academic papers.

• Industry, taken collectively Companies fund trials, extension studies and pharmacovigilance systems. They also have the resources to analyse long-term outcomes at scale. If robust comparative datasets exist anywhere, industry is among the few actors with the capability to assemble them.

Here is my speculation, labelled clearly as speculation:

If the best datasets exist, they may sit in silos. If they sit in silos, patients will not see them unless there is a strong incentive to share them.

There may be benign reasons for this. The analysis may be difficult. The results may not be robust enough for public use. Or the work may simply not be anyone’s funded priority.

Either way, the practical outcome is the same. Patients are left with asymmetrical information.

Why the gap matters

We see a common pattern. People read the leaflet, decline starting immediate treatment, feel overwhelmed, delay treatment, choose a lower-efficacy option for longer than may be wise, or stop treatment after a scare.

The point is not to push people towards a specific drug. The point is to make the comparison fair.

If we want fewer decisions driven by panic, we need clearer communication about the risk of the disease itself, presented with the same seriousness as medicine risks.

What we should build: a 'disease risk sheet'

We need a patient-facing summary that sits alongside the medicine leaflet and makes the other side of the trade-off visible. It should not be a marketing tool. It should not be coercive. It should be clear about uncertainty.

It should include:

• expected disability trajectories, with uncertainty stated plainly

• relapse recovery probabilities, including the reality that some relapses leave lasting effects

• progression that can occur without obvious relapses

• outcomes patients care about, not only a single disability score

• stratification where possible, because averages can mislead individuals

• plain language, with limitations stated openly.

This needs collaboration. Registries, academics, charities and industry all have a role. Patients should also be involved from the start.

A challenge to the MS ecosystem

If you work in MS research, registries, charities, regulation or industry:

• Do you believe a patient-ready dataset on delayed or undertreated MS exists in a usable form?

• If it does not, what is stopping us creating it from registry data, trial follow-up and real-world evidence?

• Who should fund it, and who should be accountable for publishing it?

If you know of strong work in this area, share it. If I am wrong, I would rather be corrected than keep repeating a gap that is already being solved.

Because right now, too many people with MS are forced to choose between a frightening leaflet and a vague and/or variable warning. That is not a fair decision environment.