The chief function of the Advisory Council is to provide leadership and guidance for PRINTO in: the identification and facilitation of research areas most likely to be successful and clinically or scientifically useful; the seeking of funded support for the group’s research efforts; the management and quality assurance of PRINTO membership, its scientific studies, statistical analyses, database generation, and publications. The Advisory Council has the authority to: decide membership of the PRINTO; approve grant proposals and study protocols which call for the utilisation of the PRINTO patient resources; approve the use of PRINTO databases by members of the group and non-members who have use for such data; discipline PRINTO members. The Advisory Council is also authorised to appoint sub-committees to study certain issues when the need arises
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The chief function of the International Co-ordinating Centre is to facilitate the flow of logistic and scientific details needed to design, launch and manage multi-centred, multi-national, collaborative studies. The International Co-ordinating Centre can assist the Principal Investigator in the design of the protocol, statistical analysis and generation of the final report and of the manuscript. It is located in Genova, Italy, at the Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) G. Gaslini Institute, the biggest paediatric hospital in Italy. The IRCCS are public hospitals officially recognised by the Italian Ministry of Health with the institutional duty to foster medical research
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The chief functions of the National Co-ordinating Centres are to facilitate the participation of the greatest number possible of individual PRINTO members, to disseminate information about on-going studies in the local national setting, to provide the translation of all the forms to be completed by the parents/patients, or the physician if not familiar with the English language (official language used by the PRINTO group), and to act as a liaison between the International Co-ordinating Centre and the individual members
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The chief function of each Individual Centre is to provide access to clinical data of the patients being followed. These centres constitute the main support structure to obtain a critical mass of data for on-going and future research
See clinical centres