NARRATIVE Project
The NARRATIVE Project (Natural History, Quality of Life and Patient-Reported Outcomes in Vascular Anomalies) brings together, for the first time in the field of vascular anomalies, leading experts from the Vascular Anomalies (VASCA) group, part of the European Reference Network for Rare Multisystemic Vascular Diseases (VASCERN), in a ground-breaking research initiative.
This pioneering project focuses on vascular anomalies (VAs), a group of rare, genetically defined, and highly complex disorders. While advances in our understanding of their underlying causes have led to more targeted treatments, much remains unknown about how these conditions develop and affect patients over time.
NARRATIVE’s core mission is to build an international, patient-centred registry that will follow the natural history of VAs in over 1,200 individuals across several European countries. By combining clinical, genetic, imaging, and patient-reported data, the project aims to identify key factors driving disease progression and treatment response.
Through this collaboration, NARRATIVE will deepen scientific insight, support shared decision-making between patients and professionals, and lay the foundation for future clinical trials and more effective personalised treatment strategies.
By bringing together the expertise of multidisciplinary teams in the VASCA group and patient organisations, NARRATIVE is setting a new standard in clinical research for vascular anomalies, prioritising innovation, scientific evidence, and the voices of patients.
Join us in shaping the future of care for VAs, offering hope, clarity, and a better quality of life for all those affected.
We are a consortium of experts and patient advocates from seven European countries, brought together through the VASCA Working Group within VASCERN. Our shared mission is to advance research on vascular anomalies in order to improve patient care and quality of life.
The project is coordinated by Dr. Eulalia Baselga from Hospital Sant Joan de Déu, Spain. She leads a team dedicated to research and improving the lives of people affected by vascular anomalies.
Our partner institutions and principal investigators include:
- Prof. Laurence M. Boon, Cliniques universitaires Saint‑Luc, Belgium
- Dr. Annouk Anne Bisdorff, AP‑HP Hôpital Lariboisière, France
- Dr. Friedrich Kapp, University Medical Center Freiburg, Germany
- Dr. Andrea Diociaiuti, Bambino Gesù Children’s Hospital, Italy
- Dr. Nader Ghaffarpour, Karolinska University Hospital, Sweden
- Dr. Birutė Vaišnytė, Vilnius University Hospital Santaros Klinikos, Lithuania
- Petra Borgards, Federal Association of Congenital Vascular Malformation, Germany
- Dr. Sigurd Berger, Oslo University Hospital, Norway
- Dr. Carine van der Vleuten, Radboud University Medical Center, The Netherlands
The NARRATIVE project is a 36-month European initiative focused on building a comprehensive patient registry and deepening our understanding of the the natural history of vascular anomalies.
While treatment options for vascular anomalies are evolving, many questions remain about how these conditions progress and how patients experience them over time. To achieve our mission, we focus on five core goals.
Our Goals
- Understand how genes and symptoms are connected (genotype-phenotype correlations)
- Study how vascular anomalies progress over time
- Use of trusted tools, such as OVAMA and PROMIS scales, to collect standardised patient-reported data at regular intervals from a large number of individuals.
- Learn how treatments affect quality of life and track possible side effects.
- Share all results broadly, making information available for patients, families, and healthcare professionals
Our Methodology
Patients are at the centre of the project. Before enrolling, each participant will be fully informed and asked to give consent
- Establish a European patient registry by including approximately 1,200 patients from different countries.
- Use a simple and secure app for participants to complete questionnaires such as OVAMA and PROMIS.
- Store all data in a protected database to ensure privacy and respect for participants’ rights
- Study novel genetic variants linked to vascular anomalies by observing vascular development in zebrafish models
- Actively involve patient organisations at every step to help us reach more people and share results clearly
Expected Outcomes
The NARRATIVE project aims to deliver tangible results that benefit both patients and healthcare professionals. These outcomes will support better care, clearer answers, and new research opportunities.
- Set up a European registry to collect long-term data on vascular anomalies
- Provide information that helps patients better understand the likely course (prognosis) of their vascular anomaly
- Identify new biological markers (biomarkers) to support better diagnosis and treatment of vascular anomalies
- Gather reliable data to support the design of future clinical trials
- Help doctors offer more personalised treatments to patients in Europe and around the world
Key Innovations
The NARRATIVE project introduces several important innovations in the field of vascular anomalies.
- Create the largest registry of vascular anomalies in Europe to date
- Apply OVAMA and PROMIS scales at large scale for the first time in this field
- Develop a user-friendly app that allows quick and secure collection of key data
We are committed to making our findings and materials accessible to patients, families, and healthcare professionals.
- Project flyers (in multiple languages) will be available for download
- Educational materials and updates will be shared throughout the project
- Clear, patient-friendly summaries of project outcomes as they become available
Resources will be regularly updated here as the project evolves. Follow our progress by signing up for updates via the VASCERN newsletter or follow VASCERN on LinkedIn/Bluesky/Facebook.
This project is proudly supported by leading European institutions and co-funded by the European Union.
