Safe research unravels heart diseases

With the Maastricht CardioMyoPathy Register, researchers are exploring new possibilities for the detection and treatment of heart diseases. Using an innovative database, they ensure the security of participants' data. Therefore, all participants can confidently take part in this large-scale study.

For years, cardiologists have been specializing in increasingly smaller aspects of their field, such as heart attacks, arrhythmias, or heart failure. To avoid losing sight of the big picture amidst all these heart diseases, it's useful to occasionally zoom out and take a broader view. That's precisely the goal of the Maastricht CardioMyoPathy Register (mCMP, cardiomyopathy being a medical term for heart diseases). This register maps the experiences of people with heart diseases, with the hope of gaining new insights into the development and treatment of these conditions. But how do the scientists ensure the safety of all patient data? Dr. Michiel Henkens, a researcher at the Cardiology Department and a trainee pathologist at MUMC+, as well as one of the initiators of the mCMP register, explains.

 

Digital vault

"We work with two physically separate databases. The first one contains all encrypted research data but does not include any information that can link this data to an individual, such as name, date of birth, or gender. The data does include a unique code for each person. The second database is a digital vault that holds the key to all the codes. Only the local researchers in Maastricht have access to the vault and can, with the participants' consent, contact them, for example, to request completion of the annual questionnaire or participation in other studies. Each participant decides in advance whether they allow researchers to contact them. Even those who choose not to be contacted can still participate in the study."

"With explicit consent from the participants, anonymous data can be shared with researchers from other centers to conduct joint research on heart diseases," Henkens continues. "Only the encrypted data is shared, and not personally identifiable information. The database with participant data complies with the strictest rules to ensure everyone's anonymity."

The researchers are "filling" the database in a new and innovative way. "Together with our partners, we managed to automate the data collection," says Henkens. "This is a significant advancement because previously, researchers had to manually enter all the data, which was a lot of work and could lead to typographical errors." This automation is highly welcomed, especially since the researchers aim to recruit ten thousand participants for the mCMP register to improve the detection and, hopefully, better treat myocardial diseases in the future. They are well on their way with over 2500 participants already.

A healthy heart and still participate?

"We want to compare sick individuals with their healthy peers to identify other differences besides the heart disease. This will provide valuable information to better understand the development of heart diseases, among other things.

Anyone visiting the cardiology outpatient clinic at MUMC+ with a heart disease or for screening for heart diseases can participate in the mCMP register. This includes individuals who, after examination by the cardiologist, are found not to have heart diseases. Henkens explains why: "We want to compare sick individuals with their healthy peers to identify other differences besides the heart disease. This will provide valuable information to better understand the development of heart diseases, among other things. There is another reason: although the cardiologist currently does not find any heart diseases, they can unfortunately still develop in the future. By following this group of individuals, we can gain more insight into how we can detect (future) heart diseases faster and more effectively."

The Maastricht register is popular, and other hospitals also want to participate in this secure and efficient method of data collection to better understand heart diseases. Thanks to the strictest security measures, such as separate databases, a digital vault, and automated data collection, participants do not need to worry about their data falling into the wrong hands. Voluntarily participating in the research remains safe.

We willen zieke mensen vergelijken met hun gezonde leeftijdgenoten om te zien waarin ze, behalve de hartziekte, nog meer verschillen. Dit zal waardevolle informatie opleveren om zo onder andere het ontstaan van hartziekten nog beter te begrijpen

Awardwinning!

During a gathering of researchers in the field of cardiovascular diseases on June 23, 2023, Henkens received two awards for his research: the second prize of the Einthoven Dissertation Award 2022 and, on behalf of the NLHI-Heart Bank (www.hartenbank.nl), the Wiek van Gilst Collaboration Award 2023. These awards are proof that his research and his approach to conducting research are appreciated by the scientific community.

prijzen

This article was previously published by Maastricht UMC+.

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