The Project

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