For Patients & Caregivers
Patient Organisations
In this project Harteraad, the Dutch center of expertise for living with cardiovascular disease, participates. Harteraad is a patient organisation for people with cardiac, arterial, and venous diseases (1.5 million patients) and their relatives. Harteraad works in close cooperation with the Dutch Heart Foundation, a charity organization that plays an important role in providing information on cardiovascular disease for patients and the general public. Together, Harteraad and the Dutch Heart Foundation stimulate interaction between patients and scientists to strengthen the societal impact of cardiovascular research.
In collaboration with healthcare professionals, Harteraad fights for high-quality care and quality of life for all patients with cardiovascular diseases. Harteraad connects, empowers, and represents patients in various healthcare areas.
In close cooperation with Harteraad, the Dutch patients advocacy agency “The Patient’s Voice” establishes and maintains 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!