One of the main interests of EPTRI includes the rare diseases (RDs) as they affect mainly children, and genetic RDs start early in the prenatal/childhood life with a high frequent use of medicines not specifically tested (off-label, unlicensed). To this aim, EPTRI recently became a friend of Rare Disease Day, an initiative organised by EURORDIS… Read More »
News
The short questionnaire developed by the European Paediatric Formulation Initiative (EuPFI) in collaboration with EPTRI is now available in Romanian and has been revised by the youths in Romania. The survey is aimed to find out what types of devices child and parent/caregiver use and how easy they are to handle, in order to find ways of making these… Read More »
The NIHR Children and Young People MedTech Co-operative (NIHR CYP MedTech) and Marketing Sheffield has launched the UK’s first Child Health Technology Conference – CHT2021 that will take place virtually on 2-5 March 2021. For this occasion, EPTRI has submitted an abstract entitled ‘The European Paediatric Translational Research Infrastructure to foster research on paediatric medical… Read More »
The European Alliance for Transformative Therapies was created in June 2020 as an informal interest group to foster effective dialogue around gene and cell therapies and provide evidence-based policy recommendations. The European Alliance for Transformative Therapies was officially launched on 8 December 2020 during the online event “Preparing Europe for Novel Cell and Gene Therapies…. Read More »
On 25 November 2020, the European Commission published the Inception Impact Assessment on the revision of the Orphan and Paediatric Regulations. The public consultation was closed on 6 January 2021 and was useful to collect opinions and suggestions from the different stakeholders and explore the need for adequate measures to address several shortcomings in the functioning… Read More »
We are pleased to inform you that the administration device survey is now available for two new countries: Israel and India! The short questionnaire has been developed by the European Paediatric Formulation Initiative (EuPFI) supported by EPTRI, to understand which devices the child and the parent/caregiver use and how easy they are to handle, in order… Read More »
EPTRI participated to the 6th edition of the RE(ACT) Congress and the 4th edition of the IRDiRC Conference that took place online from the 13th to the 15th of January 2021. It was organised by BLACKSWAN Foundation in collaboration with the European Joint Program on Rare Diseases (EJP RD) and in partnership with EURORDIS (European… Read More »
In the occasion of the 40° Congress Italian Society of Pharmacology (SIF), EPTRI has sent two abstracts that have been accepted as oral communication. The first abstract is entitled “EPTRI, a paediatric-dedicated research infrastructure to promote the availability of safer and efficacious drug for children” and is aimed to present EPTRI as a new infrastructure… Read More »
The European Commission published the call “Call for expression of interest for expert panels on medical devices and in vitro diagnostic medical devices” to appoint experienced clinical, scientific and technical experts to scientific panels on medical devices. The experts to be selected needed to provide consistent scientific, technical and/or clinical advice on the implementation of… Read More »
Orphan and paediatric medicines share very similar challenges; however, some overlaps currently exist between the Regulation for medicines for rare diseases and the Regulation for medicines for children. EPTRI is participating in the EC Consultation on the revision of the Paediatric and Orphan Regulations (Ref. Inception Impact Assessment Ares (2020)7081640 – 25/11/2020) to promote more paediatric and orphan medicines and… Read More »