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Newsletter no. 6 - January 2020

WHAT'S NEW
News on Fondazione Gianni Benzi onlus initiatives and projects updates

This newsletter aims to give you an update on the activities and the initiatives carried out by Fondazione Gianni Benzi onlus during the last 4 months and the future prospects to be implemented in the next months.
We are strongly engaged in the promotion of scientific research, paying particular attention to the populations with unmet medical needs. Currently, we are involved in
Sickle Cell Disease (SCD), a life-threatening disease difficult to be treated that affects also children. We are collaborating with researchers coming from African countries to increase the disease positive outcomes and its awareness.
In this framework, we started a collaboration with the
Young Persons Advisory Group in Bari (KIDS BARI), composed by young people, both patients and healthy youngers, with the aim to involve them in specific initiatives on SCD that the Foundation is performing.
Researchers from Fondazione Gianni Benzi actively participated in several events focused on
Data Science and Information Technology. Moreover, relevant collaborations with experts in this field have been established.
Furthermore, in the field of
rare diseases Fondazione Gianni Benzi
as member of the European Joint Programme on Rare Diseases (EJP RD), is working on a project proposal focused on the orphan diseases affecting children.
More about the news and the updates on the activities, initiatives and projects involving us is available below!

Breaking the ground on the c4c IT System 

One of the goals of the c4c project is to boost the quality of data gathered from the clinical trials run through the c4c project. This will provide us with information on how the c4c network is performing. Fondazione Gianni Benzi Onlus and Janssen Pharmaceutical NV are working to design and integrate IT systems and tools meant to achieve this goal. A kick-off meeting to start the development of the c4c Information System (IS) was held on 17 - 18 December 2019 in Bari, Italy.

Read more - Visit the c4c website

Advanced Therapies Science Meeting in Berlin, 25 - 26 November 2019

The 1st Advanced Therapies Science Meeting (ATSM), organised by RESTORE project, was held on the 25- 26 November in Berlin. Advanced Therapies are at the front of the innovation in medicine and include gene, cellular and tissue therapies. The use of these therapies is facilitated by the data science revolution, that is able to manage a ‘big’ amount of biological and health information. Fondazione Gianni Benzi onlus participated in this event presenting a poster during the session focused on Ethics, Economics, Big data and Artificial Intelligence (AI).
Read more - Visit the RESTORE website

ELIXIR 4th Annual Conference in Kurdejov, 11 - 12 November 2019

Fedele Bonifazi, President of the Gianni Benzi Foundation, was invited to take part to the 4th Annual Conference of the ELIXIR Czech National Node that was held on 11-12 November in Kurdějov.
The conference was the occasion to present one of the projects in which the Foundation is deeply involved. The main objective of this project is to create and design the framework for a new Research Infrastructure (RI): the
European Paediatric Translational Research Infrastructure (EPTRI) aimed to improve technology-driven paediatric research in discovery and early development phases to be translated into clinical research and paediatric use of medicines.

Read moreVisit the EPTRI website

ARISE General Assembly in London, 24 - 25 October 2019

The official ARISE General Assembly has been held in the premises of the Royal College of Pathologists, London, on 24th-25th October 2019.
More than 30 members of the ARISE Consortium from all around the world meet to discuss the project workplan advancements, to update on secondments’ achievements and to start planning new staff exchanges. Fedele Bonifazi and Baba Inusa, as Scientific Coordinator and Project Coordinator, chaired the event, introducing the discussions on key aspects for the management of Sickle Cell Disease.

EJP on Rare Disease Info Day and Brokerage Event in Istanbul, 7 November 2019

The field of rare disease is one of the main areas of interest of the Fondazione Gianni Benzi.
The Foundation is member of the European Joint Programme on Rare Diseases (EJP RD) that aims to improve the research on Rare Diseases.
In this framework, an Info Day and Brokerage Event was organised on the 7th November in Istanbul. It was the occasion to stay informed about the upcoming EJP-RD calls, meet potential partners and share innovative ideas.
Annalisa Landi, researcher from Fondazione Gianni Benzi, participated in this event presenting a project proposal focused on the orphan diseases affecting children.
Read more - Visit the EJP website

XII Foresight Training Course in Toulouse, 27 September 2019 

A special edition of the XII Foresight Training Course “Innovative medicine and research: ethical, legal and regulatory issues” was held on 27th September 2019 in Toulouse (France), within the 7th European Association on Health Law (EAHL) Conference “Innovation & Healthcare – New challenges for Europe” in collaboration with the Council of Europe and Espace Ethique PACA-Corse/AP-HM.
Legal, ethical and regulatory issues of innovation in medicine and healthcare were analysed, focusing on emerging technologies in genetics, pharmacogenetics, advanced therapies as well as ICT applications in medicine and research. It was considered besides clinical benefits also economic and health outcome improvements, as well as the respect of fundamental and patient rights.

Read more

ACROSS THE WORLD
News from the regulatory field

From Laboratory to Patient 

The European Medicines Agency (EMA) published an interactive timeline describing the journey of a medicine authorised by EMA through the EU centralised procedure.
This tool allows the user to explore the EMA procedures from the initial research to the
authorisation, and the patient access to medicines across the EU.
Moreover, it explains in particular how EMA supports medicine development by providing scientific advice, how it assesses a medicine’s benefits and risks and then continues monitoring its effects when it is used by patients after the authorisation.

Read more 

Human medicines highlights 2019 

The European Medicines Agency (EMA) has recently published an overview of its key recommendations in 2019 on the authorisation and safety monitoring of medicines for human use.
In 2019, EMA recommended 66 medicines for
marketing authorisation. Of these, 30 had a new active substance which had never been authorised in the EU before. Innovative medicines are essential to advancing public health as they bring new opportunities to treat certain diseases.
Once a medicine is authorised by the European Commission, EMA and the EU Member States continuously monitor its quality and benefit-risk balance and take regulatory action when needed.

PUBLICATIONS
Latest publications by the researchers from Fondazione Gianni Benzi

Survey by TEDDY European Network of Excellence for Paediatric Clinical Research demonstrates potential for Europe‐wide trials

Ensuring high-quality ethical research on the safety and efficacy of medicines for children represents one of the main objectives of the paediatric sector!
However, there are no summary data in the public domain about the capacity and competence of European paediatric centres to carry out research studies. To this end, the
TEDDY Network developed and piloted a survey, whose results are described in the article Survey by TEDDY European Network of Excellence for Paediatric Clinical Research demonstrates potential for Europe‐wide trials”, prepared by Lucia Ruggieri in collaboration with other TEDDY representatives.
 
Read more

The “A” of FAIR – As Open as Possible, as Closed as Necessary

In order to support and accelerate the research, data should be shared and disseminated, but at the same time the privacy right of the subjects should be safeguarded, considering data protection obligations.
FAIRification principles, making data exchange Feasible, Accessible, Interoperable and Reusable are recommended to help the process! Annalisa Landi, researcher of the Gianni Benzi Foundation, wrote her master thesis on accessibility of health data during a traineeship at Leiden University Medical Centre (Netherlands) and reported this very interesting experience in  the article “The “A” of FAIR – As Open as Possible, as Closed as Necessary”. 
Read more

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