Outcome sets

ICHOM is a non-profit organisation and undisputed authority in developing global standards for the measurement of outcomes. ICHOM has published 39 Sets of Patient-Centered Outcome Measures that cover >50% of the worldwide disease burden.

The Dutch Institute for Clinical Auditing (DICA) is a non-profit organisation originating from medical professional organisations. Working closely together with all national stakeholders in healthcare, DICA collects and delivers quality information to-and-from medical professionals, patients, and institutes.

The National Institute for Public Health and the Environment (RIVM) is a Dutch knowledge and research institute dedicated to promoting public health and a healthy and safe living environment.

The European Reference Network (ERN) is a virtual network comprised of healthcare professionals spread around Europe. They tackle complex or rare diseases and conditions that necessitate highly specialised treatment and a concentration of knowledge and resources. ERN facilitates the exchange of knowledge between healthcare professionals across borders.

Paediatric Intensive Care Evaluation is establishing a permanent registration of anonymised data regarding children in intensive care, which will provide insight into the type and severity of their illness, the treatment, and the outcome. This will also facilitate research after approval and subject to the agreements in the Privacy Regulations.

HemoNED is the Dutch Hemophilia Register of people with haemophilia and related disorders in the Netherlands. The Register improves the quality of care for these people by continuously registering, compiling, and comparing data about their illness, treatment, and treatment outcomes. Patients with home treatment register their medication and bleeding in a digital logbook, which is directly accessible to both patient and practitioner.