FGB AT THE KICK OF MEETING OF THE SUMMER SCHOOL PREPARA
Professor Adriana Ceci, member of the Board of Directors of Fondazione Gianni Benzi, participated in the kick of meeting of the Summer School Paediatric peRsonalized ExtemPorAneous foRmulAtions – PREPARA, held on July 25th in Canosa di Puglia.
Professor Ceci’s speech focused on the lack of paediatric medicines approved in Europe and subsequent off-label use as well as on the limited availability of suitable and innovative paediatric formulations, covering all the age groups. It also underlined the need to implement clinical studies and innovative technologies in the paediatric field, including the repurposing or repositioning of medicines already approved.
The Summer School aims to increase knowledge and skills of young researchers and graduates on pre-formulation, formulation studies and studies requested by a regulator. These skills are useful to know, manage and develop suitable extemporaneous formulations for paediatric conditions for which the approved medicine is lacking.
FGB EVENT ON 18 JULY 2022, BARI: THE VALUE OF THE SECONDARY USE OF DATA IN RARE HAEMOGLOBINOPATHIES
The event “Metodologie innovative e digitalizzazione per la ricerca sulle malattie rare: esperienza e risultati nelle emoglobinopatie” was held on 18 July 2022 in Bari at the Regional Council of Apulia headquarters. It was organised by Fondazione Gianni Benzi, in cooperation with the Regional Council of Apulia. The discussion focused on the latest scientific and therapeutic advancements and on the need to restart with the necessary actions also in Apulia in order to put in place the suitable healthcare programme for patients with rare haemoglobinopathies. The meeting recording is now available on our website.
THE VALUE OF NETWORKING IN THE PAEDIATRIC RESEARCH: THE POLISH AND ITALIAN EXPERIENCE
Professor Adriana Ceci, past President of Fondazione Gianni Benzi participated in the conference “Poland and Italy amid the crises and challenges in the healthcare sector – practice and experience”, held on 7th June 2022 in Rome. In that occasion, Professor ceci was awarded with the medal, in gratitude for the long-term cooperation and special merits in support of the Institute "Child Health Memorial Centre" in Warsaw, one of the most important paediatric hubs in Europe, in term of new methods and high-level standards for conducting paediatric research.
This event was the good occasion to highlight the crucial role of networking and of the actions performed in Europe to promote progress also in the paediatric research field.
With regards to this relevant topic, we were delighted to interview Dr Marek Migdal who is also member of our Scientific Committee and has been cooperating in several research and training activities carried out by Fondazione Gianni Benzi for many years.
FGB AT CONGRESSO INTERNAZIONALE MALATTIE RARE 2022 – BARI
Fondazione Gianni Benzi participated in the event “Congresso Internazionale Malattie Rare 2022: Ritorno al futuro”, held on 24-25 June in Bari. The event offered an overview on rare diseases projected towards the near future. The scientific innovation in the field of rare diseases as well as the value of the cooperation among all the stakeholders was discussed. An interesting highlight on the importance of ensuring suitable healthcare services to patients at all the stages of the disease and in all care settings was also provided.
During the event, researchers from Fondazione Gianni Benzi presented five posters on several contributions provided in the field of rare diseases that has always been one of our main areas of interest.
ACROSS THE WORLD Updates and latest news across the world
BIG DATA USE FOR PUBLIC HEALTH
Big Data Steering Groupset up by EMA and the Heads of Medicines Agencies (HMA) has published its third workplanthat sets key actions to be delivered in the period 2022-2025. The workplan will allow to further enhance the efficientintegration of data analysis into the evaluation of medicinalproducts by regulators. It lays out deliverables and timelines including: the Data Analysis and Real World Interrogation Network (DARWIN EU); a data quality framework for the European Union regulatory network to be delivered by the end of 2022; a good practice guide on real-world metadata and a public catalogue of European real-world data; the delivery of training on Biostatistics, Pharmacoepidemiology and Data Science for regulators with targeted access for patients, healthcare professionals and academics
Thalassaemia International Federation (TIF) has published the updated Version 2.0 of the Guidelines for The Management of Transfusion-Dependent Thalassaemia (TDT) - 4th Edition.
The newly launched edition includes brand new chapters on the recently approved treatments, the value of patient engagement at the decision-making level and the Reference Centres’ contribution to patient care.
Professor Adriana Ceci, past President of Fondazione Gianni Benzi participated in the conference “Poland and Italy amid the crises and challenges in the healthcare sector – practice and experience”, held on 7th June 2022 in Rome. In that occasion, Professor ceci was awarded with the medal, in gratitude for the long-term cooperation and special merits in support of the Institute "Child Health Memorial Centre" in Warsaw, one of the most important paediatric hubs in Europe, in term of new methods and high-level standards for conducting paediatric research.
