Published in Frontiers in Medicine: The application of data altruism in clinical research through empirical and legal analysis lenses

The CARE partner KU Leuven has worked with clinical research stakeholders to understand their views and gain insights into the legal ramifications of the recently introduced concept of data altruism. This novel mechanism was introduced by the recently adopted Data Governance Act (DGA), which, along with the proposal for a European Health Data Space (EHDS) promise to solve the existing challenges with respect to access to and (re)use of personal data for research. However, the new regulation with this novel mechanism might make things more complex. The DGA was adopted on 30 May 2022, and the law will enter into force on 23 September 2023.

Data altruism is understood as the voluntary sharing of personal and/or non-personal data by individuals or legal entities, without seeking a reward, for objectives of general interest, such as clinical research. New data altruism organizations will be acting as hubs for data, in a way similar to biobanks: on the one hand, they will be collecting data from individuals and companies, and on the other, they will be making the data available to other stakeholders.

Based on interviews with experts (including legal) throughout Europe, KU Leuven colleagues Teodora Lalova-Spinks, Janos Meszaros, and Prof. Isabelle Huys studied the novel mechanism. Their analysis indicates that while there is positive intent to make data sharing easier, there will likely be difficulties in the application of the act in the clinical research setting, given the interplay of the new rules with the GDPR. Further clarity from the legislator will be expected in this regard.

To learn more, click here: The application of data altruism in clinical research through empirical and legal analysis lenses

CARE External Newsletter – June 2023

The new issue of our biannual newsletter is out. In this edition, you can learn about the value CARE is bringing in the light of the changing status of the pandemic; some interesting research into Post-COVID Condition (aka Long COVID); a profile of CARE partner #Ai-biopharma, and a summary from our recent annual meeting.

Read the Newsletter here: CARE External Newsletter – June 2023

Published in PNAS: A broad-spectrum macrocyclic peptide inhibitor of the SARS-CoV-2 spike protein

The CARE partner Utrecht University, in collaboration with other research groups, has developed a spike-targeting macrocyclic peptide that demonstrated inhibition of SARS-CoV-2 infection. Structural, functional and bioinformatic analysis revealed the details of a conserved quaternary binding site. Consistent with this, the cyclic peptide was able to neutralise pseudoviruses displaying the spike protein of SARS-CoV-2 variants of concern as well as related sarbecoviruses.

This broadly neutralising peptide represents a pivotal first step towards development of spike-targeting molecules which can safeguard against emerging variants and future pandemics.

To learn more, click here: A broad-spectrum macrocyclic peptide inhibitor of the SARS-CoV-2 spike protein or access the preprint.

Succesful CARE 3r^d Annual meeting

We just finished a super exciting 3^rd CARE annual meeting in Leuven, Belgium.

Many thanks to the organizers from KUL and all participants for their great presentations and captivating discussions – this will inspire further acceleration of our most promising assets and research projects and help us to best react to the slowdown of the pandemic.

Many thanks also to the members of CARE’s Scientific and Ethics Advisory Board for great advice to CARE as it moves into its final phase before concluding in March 2025.

CARE is meeting for its 3rd Annual meeting on June 6-7

CARE consortium eagerly awaits its third, in person annual meeting on 6-7 June 2023 in Leuven, Belgium. With all other interactions between the 38 partners taking place virtually, this annual event is a welcome opportunity for showcasing endeavours and achievements, as well as enabling cross-consortium discussion and idea generation. CARE is a five-year project which is now past the halfway mark, and will conclude in March 2025.