‍- Irina Cleemput presented the NEED initiative at a discussion panel of the European Parliament. The event was entitled “Autoimmune diseases in focus: Tackling Unmet Needs as a European Public Health Priority”, 9 April 2025, Brussels.

- On April 29, 2025, Irina Cleemput and Charline Maertens de Noordhout joined a European Parliament event on building a rare disease research and innovation ecosystem. The EU’s commitment to this field was emphasized, along with the need to integrate tools like the European Health Data Space Regulation, 24 European Reference Networks, and initiatives such as Conect4children, Rare2030, Jardin, Orphanet, Eurordis, and Erdera. Participants called for a coordinated strategy and strong governance to replace fragmented efforts. They also highlighted the need for a standardized European rare disease registry to unify national data, enable cross-country comparisons, and support research, policy, and clinical work.

‍'Identification of health-related needs: The needs examination, evaluation and dissemination (NEED) assessment framework' published in Health Policy.

This paper introduces the conceptual foundations and structure of the framework.

‍'The validation of the Needs Examination, Evaluation, and Dissemination assessment framework within the European Union: a modified Delphi study' published in European Journal of Public Health. 

This study reports on the validation process of the framework using expert consensus across the EU.

- To accelerate the expansion of the NEED database, we are searching public and institutional databases for direct inclusion of unmet health-related needs data in the database

- To increase the relevance of the NEED framework to assess unmet health-related needs in paediatric populations, we are adapting the NEED assessment framework to the paediatric population

- The team is currently working on the development of economic indicators using Belgian data.

- A comprehensive ethical analysis is underway to explore the ethical implications of the NEED initiative.

- Work is progressing on the 7th NEED report, scheduled for publication in 2025. This report will focus on the NEED toolbox, including a standardized research strategy, a generic patient questionnaire and interview guide, as well as a generic expert questionnaire.

- A new standardized research protocol is being developed to guide future NEED studies. 

‍Upcoming events



- Save the date : Annual NEED symposium on Friday 28th November. More info will follow.

- Presentation of NEED at the study visit of the Slovak delegation to Belgium (27 May) and at The King Baudouin Foundation (17 June)

‍"Stimulating development of innovative medecines in the European Union: does a new definition for unmet medical need add value?" by Bloem et al., 2024

Bloem et al. discusses the European Commission's proposal to redefine 'unmet medical need' (UMN) to better steer pharmaceutical innovation. The authors highlight concerns from stakeholders about the proposed definition's lack of flexibility and its potential to hinder innovation. They advocate for a more adaptable, high-level definition that can guide resource allocation and investment decisions throughout the medicine lifecycle.

‍"Evaluationg progress towards implementation of the European HTA Regulation: Insights generated from the European Access Academy's multi-stakeholder survey" by Brinkhuis et al., 2024

The European Access Academy conducted a multi-stakeholder survey aimed to evaluate the progress of implementing the European Health Technology Assessment Regulation (EU HTA R). Stakeholders identified challenges such as Member States' readiness for Joint Clinical Assessments, capacity constraints, and the applicability of the methodological framework.