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Archive | 2015

National Plans on Rare Diseases

Domenica Taruscio; Amalia Egle Gentile; Marta De Santis; Rita Maria Ferrelli; Rosa Giuseppa Frazzica; Georgi Iskrov; Rumen Stefanov

This paper aims to describe the state-of-the-art of national plans for rare diseases (RD) in EU Member States, pointing out common as well as country-specific features and approaches. It critically assesses the national achievements in this field, drawing conclusions to further strengthen the process of planning, implementing and evaluating RD national policies.


Veterinary Sciences | 2017

Equine Assisted Interventions (EAIs): Methodological Considerations for Stress Assessment in Horses

Marta De Santis; Laura Contalbrigo; Marta Borgi; Francesca Cirulli; F. Luzi; V. Redaelli; Annalisa Stefani; Marica Toson; R. Odore; Cristina Vercelli; Emanuela Valle; Luca Farina

Equine assisted interventions (EAIs) are recently facing an increasing popularity, and are characterized by a wide diversity of practices. However, information on the welfare of animals involved in this kind of activity is often lacking. Horses are highly susceptible to work stressors related to physical constraints and/or to the need to control emotions while interacting with humans. Considerations of the emotional state of horses involved in EAIs have multiple valences: for the safety of humans and animals involved, for the quality and efficacy of interventions, as well as for ethical reasons. The aim of this unsystematic narrative review is to summarize the different approaches used for the evaluation of horses’ stress responses, investigate their application in the context of EAIs, and discuss some methodological considerations for researchers and practitioners involved in EAI. The sources of information are mostly based on electronic databases (i.e., Medline, Scopus and Google scholar), as well as on hand searches of the references of retrieved literature, and discussions with experts in the field. At present, a few studies have investigated horses’ stress responses during EAIs, and further studies are recommended, with the final aim to derive a reliable multidimensional method for assessing a horse’s reaction during therapeutic programs, ultimately helping professionals to better develop interventions by taking into consideration the animal’s perspective.


Blood Transfusion | 2014

The Italian National Centre for Rare Diseases: where research and public health translate into action

Domenica Taruscio; Linda Agresta; Annalisa Amato; Giuseppe Bernardo; Luana Bernardo; Francesca Braguti; Pietro Carbone; Claudio Carta; Marina Ceccarini; Federica Censi; Simona Coppola; Patrizia Crialese; Marta De Santis; Stefano Diemoz; Carlo Donati; Sabina Gainotti; Gianluca Ferrari; Giovanna Floridia; Claudio Frank; Rosa Giuseppa Frazzica; Amalia Egle Gentile; Orietta Granata; Yllka Kodra; Manuela Latrofa; Paola Laricchiuta; Armando Magrelli; Cristina Morciano; Agata Polizzi; Stefania Razeto; Marco Salvatore

The Italian National Centre for Rare Diseases (CNMR) is the result of a strategic approach, which the National Institute of Health (ISS) has been developing for more than 10 years, to deal with the public health challenges associated with rare diseases (RDs). The CNMR was formally established within the ISS in 20081. Its mission is to promote and develop experimental research and public health actions, as well as to provide technical expertise and information on RDs and orphan drugs, for the prevention, treatment and surveillance of these diseases. It is also the national focal point for information and communication for patients suffering from one of several thousand RDs, and for their families, collaborating with the national organisations of patients suffering from RDs. The Centre employs a wide range of scientific and technical expertise from various fields (medicine, genetics, molecular biology, epidemiology, public health, psychology, sociology etc.) and holds a network of national and international collaborations, which allow the development of a sound and integrated approach to RDs. The CNMR provides expert advice to the Italian Ministry of Health (MOH), to the National Health Council, to the National Health Service (NHS), and collaborates with the Regions, which are responsible for the provision of health services in the Italian devolved health system. Expert advice on RDs is also provided at EU and at international level. Since its establishment, the Centre has developed into a lively and propulsive hub for experimental research, public health, information, communication and training on RDs in Italy, and for patient empowerment. In addition, it has contributed to networks and scientific boards at national, European and international level and has implemented a number of strategic projects on RDs. The Centre is in continuous evolution in order to follow closely the pace of science and research, the emerging needs of patients, the solicitations of policy makers, and the demands of the health system.


International Journal of Environmental Research and Public Health | 2017

The Efficacy of Dog Assisted Therapy in Detained Drug Users: A Pilot Study in an Italian Attenuated Custody Institute

Laura Contalbrigo; Marta De Santis; Marica Toson; Maria Montanaro; Luca Farina; Aldo Costa; Felice Alfonso Nava

Drug addiction is a major care and safety challenge in prison context. Nowadays, rehabilitation and specific therapeutic programs are suggested to improve health and well-being of inmates during their detention time and to reduce substance abuse relapse after release from prison. Among these programs, several studies reported the benefits for inmates coming from animal assisted interventions. In this pilot controlled study, we investigated the efficacy of a dog assisted therapy program addressed to 22 drug addicted male inmates housed in an attenuated custody institute in Italy. The study lasted six months, the treated group (12 inmates) was involved once a week for one hour in 20 dog assisted therapy sessions, whereas the control group (10 inmates) followed the standard rehabilitation program. One week before the beginning and one week after the end of the sessions, all inmates involved were submitted to symptom checklist-90-revised and Kennedy axis V. Inmates involved in the dog assisted therapy sessions significantly improved their social skills, reducing craving, anxiety and depression symptoms compared to the control group. Despite the limitation due to the small number of inmates enrolled and to the absence of follow up, we found these results encouraging to the use of dog assisted therapy as co-therapy in drug addicted inmates rehabilitation programs, and we claim the need of more extensive study on this subject.


European Journal of Health Economics | 2016

Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe.

Marianna Cavazza; Yllka Kodra; Patrizio Armeni; Marta De Santis; Julio López-Bastida; Renata Linertová; Juan Oliva-Moreno; Pedro Serrano-Aguilar; Manuel Posada-de-la-Paz; Domenica Taruscio; Arrigo Schieppati; Georgi Iskrov; Márta Péntek; Johann Matthias Graf von der Schulenburg; Panos Kanavos; Karine Chevreul; Ulf Persson; Giovanni Fattore


Blood Transfusion | 2014

The social burden and quality of life of patients with haemophilia in Italy

Yllka Kodra; Marianna Cavazza; Arrigo Schieppati; Marta De Santis; Patrizio Armeni; Romano Arcieri; Gabriele Calizzani; Giovanni Fattore; Lamberto Manzoli; Lg Mantovani; Domenica Taruscio


European Journal of Health Economics | 2016

Social/economic costs and quality of life in patients with haemophilia in Europe

Marianna Cavazza; Yllka Kodra; Patrizio Armeni; Marta De Santis; Julio López-Bastida; Renata Linertová; Juan Oliva-Moreno; Pedro Serrano-Aguilar; Manuel Posada-de-la-Paz; Domenica Taruscio; Arrigo Schieppati; Georgi Iskrov; László Gulácsi; Johann Matthias Graf von der Schulenburg; Panos Kanavos; Karine Chevreul; Ulf Persson; Giovanni Fattore


Annali dell'Istituto Superiore di Sanità | 2017

Sustainable public health systems for rare diseases

Rita Maria Ferrelli; Amalia Egle Gentile; Marta De Santis; Domenica Taruscio


People and Animals: The International Journal of Research and Practice | 2018

The Italian Agreement between the Government and the Regional Authorities: National Guidelines for AAI and Institutional Context

Martina Simonato; Marta De Santis; Laura Contalbrigo; Daniele Benedetti; Elisabetta Finocchi Mahne; Vincenzo Ugo Santucci; Silvio Borrello; Luca Farina


Archive | 2017

Health Systems Sustainability and Rare Diseases

Rita Maria Ferrelli; Marta De Santis; Amalia Egle Gentile; Domenica Taruscio

Collaboration


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Domenica Taruscio

Istituto Superiore di Sanità

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Amalia Egle Gentile

Istituto Superiore di Sanità

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Rita Maria Ferrelli

Istituto Superiore di Sanità

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Yllka Kodra

Istituto Superiore di Sanità

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Arrigo Schieppati

Mario Negri Institute for Pharmacological Research

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