Keeping a digital diary: the world’s first home study on migraine

Although migraines are common in our population, we still know very little about the cause, says Mark van de Ruit, associate professor in biomedical technology at TU Delft. “Migraine is an unpredictable condition, which makes it difficult to look for,” says van de Ruit. “We’ve tried in the past to screen people with migraines in the hospital in different ways, but in almost all cases when patients come to the hospital, a migraine doesn’t occur. You can’t trigger a migraine attack right away.”

“Swimming cap” with sensors

That is why scientists are now searching for answers through home research, which is the first of its kind in the world. Patients complete a home diary developed by the Leiden University Medical Center (LUMC). In addition, they are asked to wear what looks like a swim cap for a short period each day that contains sensors that measure brain activity. Researchers want to use information about brain activity to determine the brain’s sensitivity to migraines.

According to van de Ruit, diary studies are of great interest in science and have been performed for a long time in patients with migraine. “By combining diary data with brain measurements, we get a good picture. This way we can determine whether what people write in their diaries is actually the trigger,” says the scientist. “Suppose someone writes in their diary that migraines occur during menstruation, we can use this information to determine whether or not that is the real cause.”

Huge shelter

The Netherlands, along with Belgium, is considered a pioneer when it comes to diary studies, but the method is not new, says Louis Keijsers, a scientist at Erasmus University. “Diary studies have been around since the 1960s, when they were done with pen and paper and you were given a pager. Every time the pager went off, you had to fill out the diary and mail it in afterward.”

What is new is the scale to which diary studies can be applied through technological developments, such as apps. “As a result, diary studies have taken off tremendously and have provided science with an enormous amount of information,” Kitsers continues. “We see hospitals doing studies, but most of the day-to-day studies are about mental health.”

She is one of the founders of a network of one hundred scholars from Erasmus University, which researches everyday life through diary studies. She also uses it for youth research, social media, and parenting research. “Diary studies provide science with surprising insights,” Kitsers says. “By studying questions, you often come to a general conclusion: This is the way humans work. But through diary studies, science teaches us that everyone has their own recipe.”

Complex interaction

Van der Ruit’s research will also not yield a clear result. “There is likely a combination of factors and a complex interplay of all kinds of things that cause migraines to occur.” Based on the information collected, scientists eventually hope to develop an app that predicts whether you have an increased risk of migraines.