GOVERNING
BODIES
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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 |
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