KCE – “NEED” for rare diseases

In the context of the Belgian Presidency of the Council of the European Union, the Belgian minister of health wants to make a focal point of identifying and using evidence on unmet patient and societal needs, with the objective of developing a healthcare system and policy that is more needs- than supply-driven.

KCE and Sciensano are currently performing a project, called NEED, that covers different aspects of the first step: 

  1. Development of a framework defining the criteria and related methods that can be used to assess health-related patient and societal needs;
  2. Development of an evidence-based process to collect evidence on these criteria. 

The objective of the study ‘NEED for rare diseases’ is to assess to what extent the NEED framework and assessment procedures for identifying patient and societal needs, are applicable to rare diseases, how the evidence collected on rare diseases according to the framework could be used by decision-makers and whether/how the framework and/or procedures need to be adapted to be applicable to rare diseases.

More information: here.