INDEX PRESENTATION 4 INTRODUCTION 5 HEAlTHCARE ACTIvITIES 7 Quality at OPBG: experiences with Joint Commission International Accreditation 8 Description of Healthcare Activities 9 Safety 13 Activities of Healthcare Professions 14 Family-Centred Care: the “Therapy of Care” 15 ACTIvITIES Of THE DEPARTmENTS 19 Surgical Department 20 Department of Emergency Admissions and Anaesthesiology/Resuscitation/Operating Rooms 24 Imaging Department 25 Laboratories Department 26 Medical-Surgical Department of Paediatric Cardiology 27 Department of Paediatric Medicine 28 Department of Medical and Surgical Neonatology 30 Department of Neurosciences and Neurorehabilitation 31 Department of Nephrology and Urology 33 Department of Oncohaematology and Transfusion Medicine 34 University-Hospital Paediatric Department 35 SCIENTIfIC ACTIvITIES 37 Research activity 38 Scientific output 40 Research funding 41 RESEARCH AREAS 43 Genetic Diseases and Rare Diseases Research Area 44 Multifactorial Diseases and Complex Phenotypes Research Area 46 Immunology and Drug Therapy Research Area 47 Oncohaematology Research Area 48 Clinical-Technological Innovation Research Area 50 Clinical Care and Management Innovations Research Area 51 PUBlICATIONS 2015 55 AUTHOR INDEX 73 PRESENTATION This is the second time I have the honour of presenting the annual report of the Ospedale Pediatrico Bambino Gesù’s activities. The numbers are encouraging, and this is why I wish to thank the entire hospital community which makes sure we achieve our real mission: to continue providing the best and most diligent care to the children of Rome, of our Lazio Region and even of other Regions and countries. Our hospital is opening even more its doors to the world, not only in its willingness to provide care for children from all continents, but also to give our doctors and researchers the best opportunities for training and for clinical and scientific collaboration with colleagues and with the most prestigious international institutions. Our hospital, for its highest standards in scientific research as well as for the amount, the complexity and the quality of clinical care it provides, is one of the most important paediatric hospitals in Europe and in the world. Therefore, thanks to these results, we have decided this year to present this Report on the Hospital’s Health care and scientific activities in an appropriate and prestigious venue, The Pontifical Academy of Sciences, in the Casina Pio IV, inside Vatican City. It is a way for us to return the fruits of our work to the Holy See and to share the challenges and the difficulties we have faced, but also our great enthusiasm, our pride in the results we’ve achieved, our joy and the inestimable satisfaction of caring for so many lives. In these pages the Hospital’s community tells its story with the rigor and transparency that have always characterized clinical and scientific reports, which are necessarily based on numbers, evidences and publications. Behind each single result though there is the heart-felt work of many people constantly striving for excellence and innovation, there are the many patients who have been cared for and families that have been welcomed, heard and supported in their difficult and painful journeys. An extraordinary work of intelligence and charity that deserves to be shared and told. Mariella Enoc President of Ospedale Pediatrico Bambino Gesù INTRODUCTION The 2015 yearbook for the Bambino Gesù Paediatric Hospital (Ospedale Pediatrico Bambino Gesù), produced jointly by the Healthcare Department and the Scientific Department, provides details of the most significant clinical, healthcare and research activities undertaken in the course of a year that has been particularly important, not only in terms of the results achieved but also because of the new developments taking place, and primarily the appointment of Dr Mariella Enoc as Chair of the Hospital Board. Dr Enoc has made a huge contribution to optimising and promoting the Hospital’s mission, which is guided, in terms of its component principles, by the universal values of Christian Charity. This mission drives and promotes the continued progress of our Hospital, which, thanks to of the excellence of its medical services and the significant degree of integration of those services with research activities, is intended to achieve the most effective possible translational outcomes. This is a project that prioritises the central position of the individual, giving full recognition and respect to the dignity of the child, the parents and the healthcare professionals involved. The clinical activities undertaken over the year have been capped by the prestigious recognition as an academic teaching hospital by the Joint Commission International (JCI), in cooperation with the Chair of Paediatrics of the Università di Tor Vergata, and coincided with the confirmation, for the fourth time, of JCI accreditation, underlining the quality of the care provided and of the organisation. In strictly clinical terms, we should highlight the remarkable performance level achieved in terms of diagnosis and treatment of patients suffering from rare diseases, in some cases through systematic application of the case management method, which makes it possible for the family and the child to have a single point of contact who is able to guide them in their relationships with the various specialists, in managing the therapeutic pathway for the patient. Furthermore, the results for organ and tissue transplants continue to be excellent (326, +4% compared to 2014), thus allowing the Hospital to maintain its leading role both nationally and internationally in the complex sector of paediatric transplantology. OPBG’s clinical activities have been given an extraordinary boost by the research programmes implemented in the Clinical Trial Centre, a unit created to foster the development of innovative treatment models through advanced pharmacological trials. In recent years, the Centre has contributed to promoting the excellence of clinical trials in paediatrics and to providing professionals with the tools necessary for performance of high-quality scientific research. Research activities have seen a consolidation and reinforcement of the trend towards the growth of all parameters for measurement of scientific results, including the total value of the Impact Factor (IF) indicator, which ranks OPBG as one of the leading institutions in the network of Italian Institution for Healthcare and Research and top among facilities that do not include a university. In particular: the absolute number of scientific publications indexed, which has surpassed the figure of 560 publications; the IF value produced by the individual researchers; the percentage of publications completed as part of cooperative international networks; and the resources attracted for research. The translational nature of these activities has been manifested, among other things, by the development of new treatment protocols, the identification of the biological basis for numerous diseases, the development of new diagnostic tests and the isolation of disease genes. One important investment made during the year involved the strengthening of the area of immunological research, which will take off in 2016 with the opening of new laboratories. Although the historical context has been uncertain and difficult, the OPBG has continued to pursue its objective of continual improvement of its activities. The presence of a single unit comprising all paediatric disciplines provides children and their family groups with highly qualified experts who are able to design and implement the most appropriate clinical and care pathway, using a holistic approach to the disease. In this sense, ours is a privileged Hospital because the synergy between care and research creates added value for the benefit of our young patients. Bruno Dallapiccola Scientific Director Massimiliano Raponi Healthcare Director HEAlTHCARE ACTIvITIES Quality at OPBG: experiences with Joint Commission International Accreditation In 2015, the Ospedale Pediatrico Bambino Gesù was of the quality of care’ and the parameters to be achieved accredited in terms of quality for the fourth time by refer to all aspects of the hospital organisation: procedures Joint Commission International (JCI), the principal for care, education of patients and their families, safety of international accreditation body in the medical sphere. infrastructure and treatment practices, qualification and Following a rigorous review, the JCI inspectors certified training of personnel, control of healthcare-associated the compliance of the OPBG according to international infections, and management of information. For hospi- standards of excellence, confirming its commitment to tals like the OPBG where medical training and clinical guaranteeing that the littlest patients have access to care research are also undertaken, there are additional require- that is safe and effective. Cooperation with the Università ments to be met in order to obtain recognition as an ‘Ac- di Tor Vergata has made it possible for the Hospital to ademic Medical Teaching Centre’. achieve the additional objective of recognition as an aca- demic teaching hospital in 2015. Joint Commission International was founded in 1994 as an international branch of The Joint Commission, The OPBG was first accredited by JCI in 2006, with this the leading and largest body in the United States for ac- recognition being confirmed subsequently in 2009 and creditation and determination of medical and healthcare 2012, on a three-year basis. During the accreditation visits, the international team evaluated the Hospital’s standards. It is a non-profit entity with a presence in more compliance with medical standards that are developed than 90 countries working to improve patient safety and and updated periodically through discussion with experts quality of healthcare, and it is considered the gold stand- from around the world, the scientific literature and good ard in healthcare worldwide. In Italy, there are a total of practices adopted internationally. The JCI method is in 24 medical organisations accredited by JCI. Of these, 14 fact based on the concept of ‘continuous improvement are accredited as hospitals and five as teaching hospitals. 8 HEALTHCARE AND SCIENTIFIC ACTIVITIES - SUMMARY 2015