Reusable health data

Data saves lives. In this research line, we strive to make health data Findable, Accessible, Interoperable and Reusable (FAIR). We develop and apply methods and policies regarding the input, storage and utilization of health data and knowledge. Additionally, we make agreements for when the data is understandable. One of our focus areas is the care for individuals with rare diseases.



c4c (conect4children) is a large collaborative European network that aims to facilitate the development of new drugs and other therapies for the entire paediatric population. It is a pioneering opportunity to build capacity for the implementation of multinational paediatric clinical trials whilst ensuring the needs of babies, children, young people and their families are met.

c4c is committed to meeting the needs of paediatric patients thanks to a novel collaboration between the academic and the private sectors, which includes 35 academic and 10 industry partners and around 500 affiliated partners. c4c endeavours to provide a sustainable, integrated platform for the efficient and swift delivery of high quality clinical trials in children and young people across all conditions and phases of the drug development process. The project strives to bring innovative processes to all stages of clinical development by generating a new model of organization and of the clinical development process.

By emphasizing inclusiveness and collaboration across geographical, specialty, sectoral, cultural and societal backgrounds, it will set up a new infrastructure to support all evaluations of medicines in children. In this manner, it will become a benchmark in the currently fragmented European clinical research environment. Best practices and up-to-date expert advice will inform the c4c approaches and methods, which will subsequently be refined in the context of viability trials.

Website: conect4children

Research line: Reusable health data


The overall aim of CAPABLE is to combine the most advanced technologies for data and knowledge management with a sound socio-psychological approach in order to develop a coaching system for improving the quality of life of cancer home patients. The system aims at early detecting and managing cancer-related issues and at satisfying the needs of patients and their home caregivers.


Research line: Reusable health data


The European Joint Programme on Rare Diseases (EJP RD) is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. We support rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high quality research into effective treatments.

Website: EJP RD – European Joint Programme on Rare Diseases

Research line: Reusable health data


PaLaDIN aims to accelerate the development of effective treatments and to establish best-practice diagnosis and care for neuromuscular disease patients worldwide by harnessing patient input and patient-generated health data to improve decision making, outcomes and healthcare solutions. To this end, PaLaDIn will develop and operate a collaborative, inclusive system that collects patient-reported outcome and experience measures, and aligns these with clinical data to advance treatments, diagnosis, and care by providing holistic, patient-level data.

Research line: Reusable health data

Staff involved

dr. Ronald Cornet, dr. Martijn Kersloot, dr. Nirupama Benis, dr. Hugo van Mens, dr. Machteld Boonstra, dr. Sebastian van der Voort, Philip van Damme MSc, Shuxin Zhang MSc, Rowdy de Groot MSc, Daniel Püttmann MSc, Joris Lieverse MSc