🎙️ Read our interview with Vasiliki Tsiompanidou, legal researcher Europrivacy, about the legal challenges in navigating the shifting #EU #legal landscape concerning #HealthData sharing and re-use.

To deploy the pilot projects, which will start later this year to test the

✉ The fourth issue of the #IDEA4RC #newsletter is out!
What are the challenges in navigating the shifting EU legal landscape about #HealthData sharing and re-use❓

👉 Read the complete issue our website
idea4rc.eu/newsletters/?i…
📥 Subscribe
idea4rc.eu/newsletter-sig…

#RareCancers

This afternoon will start the 4th plenary #meeting of the #IDEA4RC project.
Partners will gather in Milan to share progresses, perspectives and discuss the next steps towards the building of the #RareCancers #Data ecosystem.
🗓️Here you can find the agenda
idea4rc.eu/2024/04/15/fou…

#IDEA4RC researchers have identified the legal and ethical requirements needed to deploy the pilot projects across the 11 clinical centres in the consortium
👉Read more about how they did so in the summary of the latest deliverable idea4rc.eu/2024/04/24/pil…
#RareCancers #HealthData

Tumour profiling reduces cancer subtypes, complicating patient recruitment for trials. This is an unprecedented opportunity to bring #RareCancers to the forefront of oncology research.

Andrés Cervantes, president ESMO - Eur. Oncology
📰dailyreporter.esmo.org/esmo-sarcoma-a…

#IDEA4RC #HealthData #EHDS

Christina Kyriakopoulou, Scientific officer at EUScience&Innovation🇪🇺 kicks off the fourth plenary meeting of #IDEA4RC Istituto Tumori in Milan
#RareCancers #HealthData #EHDS #RealWorldData #research Horizon Europe🇪🇺

On 27 April 2024, Pablo Parente Arias Pablo Parente will present #IDEA4RC at the 71th National Congress of the Portuguese Society of Otolaryngology and Head and Neck Surgery (SPORL-CCP).

👉Find out more on our website
idea4rc.eu/2024/04/15/ide…

#HeadAndNeckCancer #HealthData #AI

Today marks the start of the 2024 meeting of the ASCO. Four days to get to know the most recent updates from oncology research.

#ASCO2024 #RareCancers

To mark the 2024 European Week Against Cancer, Euractiv has taken the opportunity to highlight the issue of #RareCancers in this week’s Health Brief.

Catherine Feore interviewed Jean-Yves Blay, general director of the Centre Leon Berard and #IDEA4RC partner.

'We’ve asked Blay

On April 29 and 30 the #IDEA4RC consortium will gather in #Milan for its fourth plenary #meeting Istituto Tumori.
🗓️You can find the agenda on our website
👉 idea4rc.eu/2024/04/15/fou…
#RareCancers #EHDS #HealthData #HorizonEurope #HorizonEU

A recent study by Olga Husson and colleagues
The Netherlands Cancer Institute presented at #ESMOSarcomaAndRareCancersCongress24
ESMO - Eur. Oncology showed that in the Netherlands #RareCancers patients experience considerable diagnostic delays (1/4)🧵👇
#WorldHealthDay2024 #MyHealthMyRight
esmoopen.com/article/S2059-…

Sapevi che il #ReginaElena è partner di IDEA4RC Project , progetto UE per creare ecosistema di dati innovativo per facilitare la condivisione e riutilizzo dei dati sui tumori rari? Obiettivo migliorare la ricerca grazie all’interoperabilità centri clinici Europa:
idea4rc.eu

Earlier this month, the Italian Personal Data Protection code was updated to facilitate the use of #HealthData for scientific #research purposes.

#IDEA4RC contributed through an open dialogue with the Garante Privacy

Full article in Corriere della Sera (in Italian)

corriere.it/salute/24_magg…

👏We welcome the news that the #EuropeanParliament approved the creation of a #EuropeanHealthDataSpace this morning.

#IDEA4RC vision of facilitating the re-use of #RareCancers data for research purposes will benefit from the new rules the #EHDS introduces.

L'Istituto Nazionale dei tumori di Milano coordina il progetto IDEA4RC Project di Horizon Europe🇪🇺 che ha come obiettivo principale quello di sviluppare un ecosistema di dati per i #tumorirari , migliorando la #ricerca e l'accesso dei #pazienti alle #cure .

Per ogni info 👇👇👇👇

Listen to #IDEA4RC coordinator Annalisa Trama, rare cancers epidemiologist Istituto Tumori, talking about her collaboration with EURACAN to implement a European #RareCancers registry.
#HealthData

April is #HeadAndNeckCancer awareness month. Listen to Dr. Katharine Price, medical oncologist Mayo Clinic, highlighting three ways to reduce the risk of developing such cancers.

The HealthDataEU_pilot project Health Data Hub developed common European forms to apply for the re-use of electronic #HealthData for research purposes. They give health data access bodies the needed information to assess applicant eligibility and comply with #EHDS
ehds2pilot.eu/available_resu…

Very insightful first day at the workshop 'Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism' at the Fondation Brocher. I look forward to presenting the work Susan van Hees, Wouter Boon and I are conducting on IDEA4RC Project tomorrow.