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Nell’anno scolastico 2014/2015 è stata avviata l’attivazione del Sistema Nazionale di Valutazione (SNV) in materia di istruzione e formazione, sul- la base di quanto stabilito dal DPR 28 marzo 2013, n. 80. Tale Sistema pre- vede, in particolare, che tutte le istituzioni scolastiche (statali e paritarie) realizzino un’attività di analisi e di valutazione interna e definiscano un in- sieme di obiettivi ed azioni di miglioramento secondo il percorso delineato dal Rapporto di Autovalutazione (RAV). Al termine dell’anno scolastico 2016-2017 le istituzioni scolastiche do- vranno pubblicare nel portale “Scuola in chiaro” un rapporto di rendiconta- zione sociale “grazie al quale si diffonderanno i risultati raggiunti, in rela- zione agli obiettivi di miglioramento individuati e perseguiti negli anni pre- cedenti, sia in una dimensione di trasparenza sia in una dimensione di con- divisione e promozione al miglioramento del servizio con la comunità di appartenenza”. Con questa pubblicazione, il GBS propone una riflessione che si inseri- sce in un processo di crescita nell’ambito della valutazione e rendiconta- zione sociale degli istituti scolastici, fornendo un proprio contributo frutto degli studi delle buone prassi e delle professionalità nazionali e internazio- nali in materia di accountability. Nel documento si evidenzia, in particolare, la differenza tra un approc- cio di accountability amministrativa, in cui la rendicontazione sociale è im- posta centralmente e in modo uniforme a tutti gli istituti secondo schemi rigidamente prestabiliti a fini di controllo e comparabilità, ed un approccio di accountability cooperativa, in cui la rendicontazione sociale recupera una fondamentale dimensione di condivisione, caratterizzandosi come un pro- cesso volontario che nasce dalla consapevolezza del dovere di render conto ai portatori di interessi (stakeholder) circa l’uso che viene fatto dell’autonomia scolastica. È quest’ultimo approccio che è stato adottato per la proposta di rendi- contazione sociale di un istituto scolastico di seguito esposta; una proposta 7 che va vista come migliorativa rispetto agli obblighi amministrativi e in- formativi cogenti. Il bilancio sociale valorizza, infatti, tutte le informazioni previste dal rapporto di autovalutazione, integrandole con altre informazio- ni che ne agevolano la fruizione, consentendo alla scuola un maggior coin- volgimento e una maggiore partecipazione negli ambiti in cui opera: una nuova forma di comunicazione inter-istituzionale. Il presente documento, seguendo il percorso di approfondimento intra- preso dal GBS – Gruppo di studio per il bilancio sociale1 a partire dal 2001, introduce e illustra i principi e le indicazioni procedurali ritenuti essenziali per la redazione del bilancio sociale negli istituti scolastici, in quanto stru- mento capace di rendere più trasparente e comprensibile la loro complessa funzione educativa, favorendo un dialogo interattivo per la collaborazione fra tutti i soggetti coinvolti. Ha così lo scopo di definire principi e indica- zioni per: ‒ guidare gli istituti scolastici (pubblici e privati) nella redazione del bi- lancio sociale o comunque nella realizzazione di processi di rendiconta- zione sociale, descrivendone il significato ed il contenuto informativo essenziale; ‒ consentire agli stakeholder di conoscere il complesso di risorse, attività e risultati degli istituti scolastici e (per quanto possibile) degli effetti sul contesto di riferimento. Tali principi e indicazioni, in parte desunti dall’esperienza e dalla dot- trina, sono stati messi a punto attraverso la discussione e il confronto con i modelli di accountability accreditati a livello internazionale. Il presente documento è suddiviso in due parti: ‒ la prima (Motivi di fondo e caratteri essenziali) espone gli obiettivi e i principi che devono presiedere la costruzione e la redazione del bilancio sociale; ‒ la seconda (Lineamenti di struttura e contenuti) illustra i contenuti delle sezioni nelle quali è stato suddiviso il bilancio.

While they account for one-fifth of new cancer cases, rare cancers are difficult to study. A higher than average degree of uncertainty should be accommodated for clinical as well as for population-based decision making. Rules of rational decision making in conditions of uncertainty should be rigorously followed and would need widely informative clinical trials. In principle, any piece of new evidence would need to be exploited in rare cancers. Methodologies to explicitly weigh and combine all the available evidence should be refined, and the Bayesian logic can be instrumental to this end. Likewise, Bayesian-design trials may help optimize the low number of patients liable to be enrolled in clinical studies on rare cancers, as well as adaptive trials in general, with their inherent potential of flexibility when properly applied. While clinical studies are the mainstay to test hypotheses, the potential of electronic patient records should be exploited to generate new hypotheses, to create external controls for future studies (when internal controls are unpractical), to study effectiveness of new treatments in real conditions. Framework study protocols in specific rare cancers to stepwisely test sets of new agents, as from the early post-phase I development stage, should be encouraged. Also the compassionate and the off-label settings should be exploited to generate new evidence, and flexible regulatory innovations such as adaptive licensing could convey new agents early to rare cancer patients, while generating evidence. Though validation of surrogate end points is problematic in rare cancers, the use of an updated notion of tumor response may be of great value in the single patient to optimize the use of therapies, all the more the new ones. Disease-based communities, involving clinicians and patients, should be regularly consulted by regulatory bodies when setting their policies on drug approval and reimbursement in specific rare cancers ., While they account for one-fifth of new cancer cases, rare cancers are difficult to study. A higher than average degree of uncertainty should be accommodated for clinical as well as for population-based decision making. Rules of rational decision making in conditions of uncertainty should be rigorously followed and would need widely informative clinical trials. In principle, any piece of new evidence would need to be exploited in rare cancers. Methodologies to explicitly weigh and combine all the available evidence should be refined, and the Bayesian logic can be instrumental to this end. Likewise, Bayesian-design trials may help optimize the low number of patients liable to be enrolled in clinical studies on rare cancers, as well as adaptive trials in general, with their inherent potential of flexibility when properly applied. While clinical studies are the mainstay to test hypotheses, the potential of electronic patient records should be exploited to generate new hypotheses, to create external controls for future studies (when internal controls are unpractical), to study effectiveness of new treatments in real conditions. Framework study protocols in specific rare cancers to sequentially test sets of new agents, as from the early post-phase I development stage, should be encouraged. Also the compassionate and the off-label settings should be exploited to generate new evidence, and flexible regulatory innovations such as adaptive licensing could convey new agents early to rare cancer patients, while generating evidence. Though validation of surrogate end points is problematic in rare cancers, the use of an updated notion of tumor response may be of great value in the single patient to optimize the use of therapies, all the more the new ones. Disease-based communities, involving clinicians and patients, should be regularly consulted by regulatory bodies when setting their policies on drug approval and reimbursement in specific rare cancers.

European Workshop on Genetic Testing Offer in Europe, 19-20/11/2012 The workshop was designed with the aim of bringing together experts and stakeholders in the field of genetic testing to discuss the (future) organization of genetic testing in Europe. Obviously since it will not be possible to adequately deal with all aspects of genetic testing within the framework of one workshop, a limited number of issues have been selected. The selection was based on the importance and urgency of the matter and the need and opportunity for action at the European level, and the likelihood for successful intervention. Primary deliverables of this workshop are planned as to be able to define a vision on the use, value and integration of genomic medicine into clinical practice and to prepare a briefing note to highlight the specific points that deserve the Commission’s interest. Quality of genetic testing and organization of genetic testing services were the two main themes of the scope of the workshop. To warrant the quality of the genetic diagnostic laboratories the way forward is to make accreditation the norm, i.e. the diagnostic laboratories in Europe should be accredited. To further guarantee equity, the regulation should include the requirement for all tests to be within the scope accreditation. The embedding of genetic testing in a healthcare setting can ensure a context where due emphasis is being provided on the individualized medical supervision of patients, the presence of pre-test and post-test counseling, psychological follow-up if appropriate and quality assurance of the tests performed. In light of growing number of companies selling and advertising genetic tests, it is crucial that information is available for healthcare professionals and the general public that gives background on genetic testing and describes the provision of genetic testing services., JRC.I.3-Molecular Biology and Genomics

LiBF 4 in acetonitrile efficiently catalyzes the aminolysis of trimethylene oxide and 2-octyl oxetane under mild conditions (r.t. or 80°C) to give the corresponding γ-amino alcohols in very good yields.

The Functional Assessment of Multiple Sclerosis (FAMS) quality of life (QoL) instrument is a disease-specific, self-report questionnaire that was developed originally for US English-speaking patients. Here, the psychometric properties of the FAMS QoL questionnaire for Italian-speaking patients with multiple sclerosis (MS) are evaluated and compared with the results from the original FAMS validation survey ( n =377). Eighteen Italian centers and 344 patients with MS participated in the study. The overall reliability (as expressed by Cronbach's α value) of the FAMS score, and its subscale scores, was always over the threshold of 0.8. Patients with benign MS showed a better overall QoL compared with patients with relapsing–remitting MS (RRMS; p =0.017), whereas patients with RRMS had a better QoL than patients with primary progressive MS (PPMS). No difference in QoL was found between patients with PPMS and those with secondary progressive MS. The Italian FAMS questionnaire is a valid measure to assess the QoL concerns of patients with MS. FAMS is also easy to administer and is well accepted by patients.