Patient registries may sound technical, but they are actually one of the easiest ways people living with a long-term condition can get involved in research.
By sharing their own experiences of everyday life, either directly or via their healthcare team, they can help researchers find answers to questions that clinical trials alone cannot address.
Here, Professor Rod Middleton, principal investigator and system architect for the UK MS Register, and Professor Ruth Dobson, lead of the UK MS Pregnancy Register, explain what registries are, how they work, and how the data they collect makes a real difference to real people in the real world.
What is a patient registry?
Patient registries collect data about people with a particular medical condition, and researchers then use that information to answer questions and improve care.
Prof Middleton said people “often get the wrong end of the stick” when it comes to how a registry works. “People think back to school, where the teacher calls your name and you get a tick for being present,” he said. “In a patient registry, we need a bit more information than that.”
Prof Dobson agreed, adding that the name can often be misleading. “The word ‘registry’ makes it sound as though you sign up once and that is it, but it is more than that,” she said. “People sign up and then continue to provide information about themselves and their disease.”
Collecting information from people going about their everyday lives over the long-term builds a rich database of real-world information. And it is this approach that makes registries different from other types of research.
“Research is generally done in two different ways. We have cross-sectional data, which is a snapshot of what’s going on exactly now, and longitudinal data, where you monitor how things change over time,” explained Prof Middleton.
While a registry can capture both types, they are especially well suited to longitudinal, or long-term, data collection. This is important because monitoring people over time is the only way to answer questions such as whether treatments work in the long-run, or how diet, smoking, or lifestyle factors impact on condition progression.
“Registries do not answer everything, but they are an important piece of the jigsaw,” said Prof Dobson.
In essence, registries hold the data on people’s everyday lives, and researchers use that information to answer their questions. Clinical trials are different. They are designed specifically to answer a single question, such ‘does this drug work?’. Participants have to follow strict instructions, such as taking or avoiding certain medicines, and having particular tests at set times. What’s more, clinical trials will only include people who fit certain criteria, as differences can influence the results.
Prof Dobson explained: “When you are asking a question like ‘does this drug work’, you need that clean information. You need to know that nothing else is driving the answer you get from the research.” In contrast to clinical trials, registries include all kinds of people from all kinds of backgrounds, making them more representative. “With registry work, we almost celebrate the messiness of it all,” said Prof Dobson. “Because that is what life is like: it is chaotic. Every person is different and brings their own contribution. It is about looking at how things work in normal, everyday life.”
Collecting MS research data, answering questions
Registries collect data in different ways. The main two are clinician-reported, in which doctors and nurses provide the ongoing data, and patient-reported, in which people sign up themselves and provide their own information.
The MS Register and the MS Pregnancy Register both have patient-reported elements. The MS Register, for example, surveys participants every six months, while the pregnancy register asks questions two times during, and two times, after pregnancy. Each set of questions takes between 10 and 20 minutes to complete.
Prof Middleton said his team were keen to prioritise the voices of people living with MS when setting up the registry, which now holds data on more than 50,000 individuals, back in 2010.
“Up until that point, most registries were largely clinician-reported. But real-world data from a clinician’s perspective and real-world data from a patient’s perspective are not necessarily the same,” he explained. “Patients are the best narrators of their own condition: nobody knows what it is like to live with a condition better than them, and I think it is really important that a registry reflect that.”
Patient-reported registries also mean as many people as possible can take part, said Dr Dobson, noting that not everybody has a specialist hospital or centre.
Once a registry is established, researchers can apply to use the data to answer their questions, or to share additional surveys with participants. The resulting research papers are then shared with the wider healthcare community to help improve care.
During the COVID-19 pandemic lockdown, for example, researchers used the MS Registry to gather data on vaccination and isolation rates. They fed this back to doctors and nurses to help them support people living with MS.
The MS Pregnancy Register, which was set up around the same time as new clinical guidelines on pregnancy in MS were published, has already made a huge impact.
“The data we are getting on pregnancy outcomes – on what is actually happening to women and their babies – mirrors that of the general UK population. That is really reassuring and allows us to say ‘it is OK to have MS and to be pregnant’,” said Prof Dobson. “Not so long ago, people were not being told that.”
She also explained that data privacy is well protected, with organised registries following regional or global guidelines and regulations around data security. “We are very careful to make sure that no one can be identified as an individual within the data,” she added.
Why get involved in MS patient registries?
Prof Dobson described signing up to a registry as “a selfless act” and a way of “allowing people with MS in the future to benefit from your experience”, though some registries do offer incentives to take part.
Prof Middleton explained that the MS Register, for example, gives people access to their survey scores and results. This helps them better understand how their condition affects them over time, as well as share the information with their care teams. But in his experience, people take part not because of any direct benefit, but because they want to “pay it forward”.
Said Prof Middleton: “I am continuously humbled by the passion people living with MS have to keep giving us their time, their energy, and their information. Data saves lives, and every single time someone contributes, it blows me away.”
Most European countries now have at least one registry and Prof Middleton and Prof Dobson encouraged anyone interested in signing up to speak to their healthcare team to find out more.
Follow the links to find out more about the UK MS Register or the MS Pregnancy Register, or find an ECTRIMS Community Supporting Partner in your region and ask about registries in your country
Acknowledgements
Special thanks to medical and life sciences content writer Amanda Barrell for developing this ECTRIMS feature article, and to Prof Rod Middleton and Prof Ruth Dobson for sharing their expertise and insights on the role of patient registries in advancing MS research.