The event “Metodologie innovative e digitalizzazione per la ricerca sulle malattie rare: esperienza e risultati nelle emoglobinopatie” was held on 18 July 2022 at 8.30AM CEST in Bari (Italy), at the Regional Council of Apulia headquarters (Via Gentile, 52).
The event was an opportunity to present the results of the research project[1], funded by the Apulia Region and coordinated by Fondazione Gianni Benzi, which applies new methodologies of data analysis and integration (Multiple-Criteria Decision Analysis – MCDA) to the field of chelation therapy in paediatric patients with transfusion-dependent haemoglobinopathies.
Relevant international experts with clinical, regulatory, data management expertise took part in the discussion, as well as representatives from the regional institutions, from Agenzia Regionale Strategica per la Salute ed il Sociale (AReSS) and patients’ associations.
The event aimed to pursue the following objectives:
- to demonstrate how the application of innovative methodologies can support drug development, including risk-benefit assessment, in order to accelerate the patients’ access to safe and effective treatments
- to promote the discussion on the assessment of technological innovation and its implementation in the clinical practice between health authorities, researchers, clinicians and patients
- to enhance the collection and sharing of available data at regional level also by fostering their integration within digital networks and innovative international projects.
For more details consult the programme here.
[1] The project is funded by Apulia Region
