For Patients & Caregivers
Patient Organisations
In this project, Hartstichting (the Dutch Heart Foundation) participates. The Hartstichting is a Dutch charity dedicated to reducing the burden of cardiovascular disease in the Netherlands through prevention, research, and better care. It also serves as a patient organisation for people living with cardiovascular disease (nearly 1.8 million in the Netherlands) and their loved ones, ensuring the patient perspective is structurally embedded in research and innovation.
The Hartstichting’s mission is to improve heart and vascular health for everyone, now and in the future, by supporting healthier environments and lifestyles, detecting risk and disease earlier, investing in better treatments, strengthening rapid help in emergencies, and improving daily life for patients and their loved ones. It supports this mission by connecting, empowering, and representing patients, and by fostering interaction between patients and scientists to strengthen the societal impact of cardiovascular research.
During the first years of the project, Hartstichting worked together with the Dutch patient advocacy agency “The Patient’s Voice”, which established and maintained the Patient Advisory Board for the STOPSTORM Project.
Discover our latest Study Results
Explore easy-to-read summaries of our study results written for patients and caregivers. Click below to see how our research connects to real-life experiences.
Why Patient Involvement Matters
Patient involvement is a necessity in healthcare and medical research. The patient’s perspective has an undeniable added value for our research, outlining the patient’s priorities and preferences.
In STOPSTORM, involving patients and caregivers helps ensure that the research remains focused on real-world needs and experiences. Patients provide critical insights into what matters most to them—such as quality of life, symptom relief, emotional burden, and the daily impact of treatments.
Including patient voices in the research process:
- Improves the relevance of study design and outcome measures
- Promotes transparency and trust between researchers and the wider public
- Strengthens ethical decision-making, especially in novel treatment approaches like STAR
- Supports shared decision-making, where clinicians and patients work together to find the most suitable care path
We believe that meaningful patient involvement helps us deliver more personalized, effective, and compassionate care for those living with ventricular tachycardia and related heart conditions.
Have a look at the convincing arguments from Dr. Saskia de Jager PhD / MSC on the importance and added value of participating patients in research!