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NEED Spring Newsletter 2026

NEED Spring Newsletter 2026

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‍NEED is a 3-year research project aiming to identify and measure unmet health-related needs for a more needs-driven healthcare policy and innovation.

‍Newsletter #9

Spring 2026

We are pleased to share some updates regarding the NEED (Needs Examination, Evaluation, and Dissemination) project.  

 

Over the past few weeks, the project has achieved two key milestones with the publication of two new reports: one exploring the use of artificial intelligence in grey literature searches, and another assessing unmet needs of patients with psychotic disorders.

 

We also said goodbye to Sabine Corachan, who is embarking on new personal challenges. We thank her for her valuable contributions and wish her all the best for the future. At the same time, we are delighted to welcome Cato Dambre from Sciensano. Cato will focus on enhancing the integration of national databases into the NEED database (including BeBOD and HIS), as well as mapping European datasets with relevant indicators to help identify high unmet needs in line with the NEED assessment framework.

 

Finally, we warmly congratulate Zilke Claessens on completing her PhD. As a researcher at KU Leuven, Zilke has made important contributions to the NEED project. We wish her all the success in the next steps of her career.


Happy reading!

 The NEED team

 

‍NEED updates

  • Publication of a new report on the unmet health-related needs associated with psychotic disorders!  We would like to sincerely thank all the patients and healthcare professionals who contributed to this study. Find out in our report!
  • Publication of a new report on the use of artificial intelligence for grey literature. Grey literature, whether reports from authorities, local studies, or documents produced by interest groups, often contains valuable information that cannot be found in peer-reviewed journals or the regular literature databases. Find out in our report !

      

‍NEED presentations

 

  •  On the 2nd of March 2026, Irina presented NEED at the INFORM-RD opening symposium, KULeuven, and identified strong synergies between the two projects. The INFORM-RD of the KULeuven project will deliver a platform for collection and use of data on unmet needs of Rare Disease patients to assist policy makers, industry and researchers in patient-centred decision-making related to relevant clinical endpoints or innovative therapeutic approaches. It builds on the work of NEED and will be an important step forward to more needs-driven innovation for patients with rare diseases.
  •  Claudia attended a 30 January 2026 conference at the Belgian Senate on sickle cell disease, highlighting its major impact despite limited awareness and no widely available cure. Organised by Senator Elhadj Moussa Diallo with patient groups, it stressed the need for better recognition, less discrimination in care, and improved access to blood donations, especially rare type.

 

‍What we are reading

  • D‍omingo-Esteban, C., Heikkinen, I., Hefting, H. Addressing Unmet Medical Needs in Drug Development: Assessment and Implications for Regulatory and Clinical Development Strategies. J. Mark. Access Health Policy 2026, 14(1), 15; https://doi.org/10.3390/jmahp14010015 

  •        Van Isterdael, C., Claessens, Z., & Huys, I. (2026). Criteria for unmet need in paediatric populations and their families: a literature-based case study in haematological malignancies in upper-middle and high-income countries. Front Pediatr. 2026; https://doi.org/10.3389/fped.2026.1765938

  •      Lenz, C., Varkonyi, P., Dell'Aquila, M. Patient-centred health research and innovation in the EU - A preliminary exploratory study, available on the Parliament’s website 10 April 2026: Patient-centred health research and innovation in the EU - A preliminary exploratory study | Think Tank | European Parliament. In the recommendations:  

    •      “The European Commission should establish systematic mechanisms for translating patient needs into research priorities, building on Belgium’s NEED methodology. This requires dedicated funding for unmet needs assessments conducted through validated frameworks involving patient communities, complemented by real-world evidence and patient-reported outcomes data”.  

    •     “Unmet needs assessment findings should inform thematic priorities within Horizon Europe successor programmes, the European Competitiveness Fund, and relevant Joint Undertakings”.  

    •      “This NEED based methodology could also be scaled at a national level in MS to provide context informed, patient-identified needs across health domains to inform national-level agenda setting. This would also require dedicated public funding or blended funding options to incentivise uptake and sustainable integration”. 

‍What we are watching

Réalisation : Maria Bemba; Image : Anna Lawan & Adrien Médy; Montage et musique : Stéphanie Mira; Etalonnage : Charlie Demeur; Mixage son : Besnik Nikqi (seulement disponible en français) 

 

‍Ongoing activities

The team is currently focused on:

  •       A comprehensive ethical analysis exploring the ethical foundations and implications of the NEED initiative.
  •       Deloitte, HUB and NEED teams are working on the recruitment strategy of the patients of the NEED case study on sickle cell disease.
  •        We are developing an adapted NEED assessment framework for paediatric populations and adapting the NEED tools to better capture unmet health-related needs in paediatric populations.
  •     We are preparing the integration of the data from the Belgian Health Interview Survey into  the NEED database.

 

‍NEED is financially supported by the Belgian Federal Science Policy (BELSPO) through the INFRA-FED call.