On 17 January, the Kick-off meeting launching Share4carers project took place in Athens. CVBF is an associated partner in the project aimed to promote key solutions by uniting patients’ organization, academics, clinicians and carers from Belgium, Greece, Italy and Turkey at national level and providing them with the skills and knowledge necessary to promote psychoeducation and raise awareness about the societal impact of being children of parents with mental health problems in Europe. Representatives of the above groups will meet on multiple occasions during the lifecycle of the project in order to share good practices, exchange perspectives on effective advocacy strategies and learn how to engage with decision-makers at national and EU levels. Goal is to draw the attention of the academic and the general public, as well as relevant state institutions, to the importance of the development of basic and clinical psychoeducation as well as a key solution in the prevention, early detection, intervention, and support of children. The meeting provided the occasion to take stock of the situation related to the current condition of patients and families of patients with mental ill health, with a particular interest for young carers as children born to parents with psychosis and mental disorders.
SAVE THE DATE. EJP RD: join the RE(ACT) Congress and IRDiRC Conference, 11-14 March 2020, Berlin, Germany
The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium, will organise the RE(ACT) Congress and IRDiRC Conference 2020 – Berlin, Germany 11-14 March. This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together scientific leaders and experts and young scientists from a variety of breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss policies related to rare diseases research. Patients and patient organizations, who are committed to research, will also be in attendance to share their experiences and perspectives. This year the joint edition of the 6th edition of the RE(ACT) Congress and the 4th IRDiRC Conference will be organized in collaboration with the European Joint Program Rare Diseases (EJP RD) and in partnership with Eurordis (European alliance of patient organizations) and RDI – Rare Diseases International (global alliance of people living with a rare disease). EJP RD is a Co-fund action aimed to create a comprehensive, sustainable system allowing virtuous circle between research, care and medical innovation. CVBF is among the beneficiaries of this project that has as objective to create a research and innovation pipeline “from bench to bedside” ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients. The RE(ACT) Congress – International Congress of Research on Rare and Orphan Diseases – was initiated in 2012 by the BLACKSWAN Foundation to create a forum for and promote scientific cooperation and research on rare and orphan diseases. IRDiRC – launched in April 2011 at the initiative of the European Commission and the US National Institutes of Health – fosters international collaboration on rare disease research by bringing together researchers, [...]
SAVE THE DATE. “Inclusive education and Autism” meeting at Liceo “E. Fermi” of Bari, 28 January 2020
On 28 January 2020, the event “Inclusive education and autism” will be held at Liceo "E. Fermi" of Bari and CVBF will participate to present SPASD project courses, the new strategies and e-learning tools improving inclusive education In the framework of SPASD, an international project funded within the European Programme Erasmus+ and arose from the willing to offer equal opportunities to children with ASD, a e-learning course has been developed and distributed in the four countries involved in the project (Romania, Italy, Poland, Netherlands). The e-learning course aims to increase competences and skills of teachers which do not only concern providing high quality and inclusive classroom teaching but also providing support in the transfer of capabilities from school to community life for students with ASD and in building a partnership with parents in educating the child. The event will provide the occasion to increase awareness on the theme of autism and the importance of inclusive education, and sensitize the young students about the significance of the integration in the classroom. For more information please click here.
EPTRI (European Paediatric Translational Research Infrastructure) has announced a Call for Abstracts for the EPTRI Open Meeting that will be held on April 2-3 April 2020. EPTRI is an EU funded project coordinated by CVBF and aimed to design the framework for a new infrastructure dedicated to paediatric research that will work to accelerate a technology-drivenpaediatric medicines development processes from drug discovery and early development phases to be translated into clinical phases and medicines uses Currently, EPTRI has launched this call inviting all the researchers that have expressed their interest to participate to EPTRI development by filling in the survey online. Deadline for Abstract Submission is 29 February. Presenters can submit a maximum of three abstracts but can be the presenting author of only one. The topics should have relevance for paediatric medicines development from medicines discovery, biomarkers identification and preclinical research to developmental pharmacology, age tailored formulations and medical devices. Further information about abstract submission and acceptance criteria are available here.
We are happy to announce that CVBF will be involved in the new project AMELIE – Anchored Muscle cELIs for IncontinencE aimed to test a new clinical approach for the treatment of faecal incontinence (FI) arising from childbirth injury in women. Faecal incontinence is a common condition affecting around 67 million people in Europe, seriously impairing living and productivity of affected individuals and their families. Women with FI arising from childbirth injury may benefit from regenerative medicine using autologous skeletal muscle derived cells (ASMDC) to restore function of damaged sphincter muscle. However, progress is hindered by sub-optimal manufacturing and delivery techniques contributing to inconsistent results. AMELIE proposes an innovative approach that uses ASMDC attached to implantable microcarriers that will enable delivery of a higher number of viable ASMDC into the damaged sphincter muscle, increasing the likelihood of cell engraftment, regeneration of muscle and improved continence. To achieve this aim, AMELIE will develop bespoke implantable microcarriers suitable for clinical use; establish robust bioprocessing for manufacture of the cell-microcarrier combination; and for the first time, robustly test, in a randomized clinical trial, the principle that delivery of ASMDC in an anchored, natural state, provides more effective and consistent treatment. AMELIE was funded by European Union’s Horizon 2020 and CVBF is involved in the project as the beneficiary in charge of CRO-like activities, providing support to the Sponsor and the sites in the conduct of the study. CVBF activities include clinical study management, regulatory procedures (submissions to regulatory authorities and ethics committees), TMF management, pharmaco-/materio-vigilance, and monitoring. For more information, please click here.
In June 2018, IntechOpen Book, one of the world’s leading publisher of open access books, published the book entitled “The Management of Clinical Trials”, including a chapter written by experts from Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) and TEDDY European Network of Excellence for Paediatric Clinical Research. The chapter, entitled “Challenges in Paediatric Clinical Trials: How to Make It Feasible”, is dedicated to the crucial and challenging aspects hampering the paediatric drug development and to the innovative approaches that can be used to promote high quality paediatric studies. After a recent analysis tracking the chapter metrics, the staff of IntechOpen has communicated that the chapter has reached 500 downloads and had 1 dimensions’ citation and 1 cross-ref citation. More than 500 researchers, most of them coming from USA, read, downloaded and interacted with the contents of the chapter. We are proud of this important achievement and glad that the shared information was of interest for the scientific community. If you did not still read the chapter, click here.
The official presentation of the 25 Factories passed the selection within “Estrazione dei Talenti” (Talents mining) action will be held on January 29th, 2020 in Bari, Italy, at the pavilion of the Apulia Region, Fiera del Levante. The event, organised by the Regional Agency for Technology and Innovation – ARTI, is opened to the audience and the press, and will be attended by the President ot the Apulia Region, Michele Emiliano, and representatives from the regional institutions involved in the action. During the morning session the Factories will provide a brief presentation on their strengths while in the afternoon an infopoint area will be active to provide information to the Teams interested in the entrepreneurship leading programs offerd by Factories. EVOLUTIO START UP Factory which aims at developing business ideas in the r&d, pharm, biotech, medical devices and eHEalth fields will be represented by Paolo Di Silvestro and Bernardetta Maresca from Bioindustry Park, Michele Saviano from CNR and Donato Bonifazi from CVBF – Factory Coordinator. The Programme of the event will be available in the next days.
We are glad to announce that the DEEP-2 study Phase III multicentre, randomised, open label, non-inferiority active-controlled trial aimed at comparing for the first time the efficacy of deferiprone (DFP) versus deferasirox (DFX) in paediatric patients aged from 1 month to less than 18 years, affected by hereditary haemoglobinopathies has terminated and the results are available on EudraCT Database and on the DEEP website. Included in the DEEP (DEferiprone Evaluation in Paediatrics) project (FP7 GA n. 261483), DEEP-2 trial involved 393 patients recruited in 23 clinical centres in 7 EU and non-EU countries: Albania (2), Cyprus (1), Greece (1), Egypt (3), Italy (12), Tunisia (1), UK (3). In particular, the study intended to investigate the changes in terms of ferritin levels and cardiac iron concentration in order to assess the non-inferiority of deferiprone compared to deferasirox in paediatric patients affected by hereditary haemoglobinopaties requiring chronic transfusions and chelation. Overall, the study provided evidence to support the use of DFP in paediatric patients. DEEP is a 6-year European Project (FP7) coordinated by Consorzio per Valutazioni Biologiche e Farmacologiche and involving 23 recruiting centres in European and non-European Countries. DEEP Project has been developed with the specific intent to integrate the existing information on deferiprone use in paediatric patients and evaluate its safety in this particular population. For more information about DEEP project, visit the official web page.
It is possible to capture and communicate the essence of International Children's Advisory Network (iCAN) through the art? Can a drawing explain the importance of the role of iCAN organisation? This was asked to Emanuela Ruscitto, one of the members of KIDS Bari, who succeeded to create a drawing and a video representing the strength, the multiculturality and tenacity of the iCAN members. In occasion of the year-end thanks and greetings, iCAN invited its youth members to share a creative idea showing special thanks from iCAN to all its members for the work performed and the efforts put in 2019. Emanuela’s idea was selected for this purpose and she shared her original work entitled “Different but same”. As Emanuela explained “it could be nice to recollect all the iCAN members in a singular one, portrayed with a selection of our different characteristics." Have a look at Emanuela’s video and read iCAN’s special thanks here.
In December 2019 started Share4Brain (Sharing Good Practices for Brain Education in Europe), the project funded within the European Programme Erasmus Plus – Strategic partnership for adult education that will be kicked off officially on 15 and 16 March, 2020. The project, led by Belgian Brain Council, gathers a consortium of 4 partners beyond the coordinator: Greek Carers Network EPIONI, Consejo Español del Cerebro, Serbian Brain Council, Consorzio per Valutazioni Biologiche e Farmacologiche. The aim of Share4Brain is to connect patients, brain researchers, scientists, clinicians and carers at national and international level, providing them with the skills and knowledge necessary to promote brain research and raise awareness about the societal impact of brain diseases. Representatives of the above groups will meet on multiple occasions during the lifecycle of the project in order to share best practices, exchange perspectives on effective advocacy strategies and learn how to engage with decision-makers at national and EU levels. What is more, the project aims to bring them together within National Brain Councils (NBCs), thereby uniting all stakeholders involved in brain research within transversal platforms that operate at country level. Lastly, “Share4Brain” will aim to enhance cross-border cooperation between NBCs for the purpose of defining key priorities for National Brain Plans, which will ultimately benefit people living with mental or neurological conditions. CVBF will be involved in the implementation of training activities and sharing of good practices through workshops and translational meetings. The press release published on EU Commission portal is available at this link.