Sustainable public health systems for rare diseases

In the framework of the Joint Action for Rare Diseases (RD-ACTION), a specific task was defined to identify mechanisms influencing sustainability, equity and resilience of health systems for rare diseases (RDs).Method: literature narrative review on health systems sustainability and resilience for RDs. Years: 2000-2015. Databases: PubMed, Scopus, EBSCOHost, EMBAL, PASCAL, EMBASE, STN International and GoogleScholar. Analysis: interpretive synthesis concept and thematic analysis (Dixon-Wood et al.)Results: 97 papers and 4 grey literature publications were identified. Two main topics stand out: economic evaluation and networks. The first topic did not identify widely accepted criterion to assign more weight to individuals with greater health needs. Healthcare network are identified as increasingly important for sustainability and resilience, in all of their aspects: professional (‘expertise’), ‘experience’ networks of users and carers; policy, learning, and interest networks.In conclusion, possible mechanisms for ensuring sustainability can be identified in networking, patients’ empowerment and reorienting healthcare towards integrated community and home care

Exploring the usability of EUCERD core indicators for rare diseases

In the context of the Community Programme in the field of Health, the European Commission financed a series of initiatives to support the development and use of indicators for planning health services for Rare Diseases (RDs). The European Project for Rare Disease National Plans Development (EUROPLAN) elaborated a set of 59 process and outcome indicators, for monitoring the implementation and for evaluating the impact of the National Plans on RDs. Due to the high number and difficulty in handling the indicators, the subsequent Joint Action "Working for RDs" planned to derive a selection of 21 core indicators that were adopted by the European Union Committee of Experts on RDs in June 2013. The descriptive study carried out in the framework of the Joint Action to select the key indicators to orient policies for RDs shows that core indicators represent an excellent opportunity to share knowledge and comparability among Member States

Gaming Technology for Pediatric Neurorehabilitation: A Systematic Review

Introduction: The emergence of gaming technologies, such as videogames and virtual reality, provides a wide variety of possibilities in intensively and enjoyably performing rehabilitation for children with neurological disorders. Solid evidence-based results are however required to promote the use of different gaming technologies in pediatric neurorehabilitation, while simultaneously exploring new related directions concerning neuro-monitoring and rehabilitation in familiar settings. Aim of the study and methods: In order to analyze the state of the art regarding the available gaming technologies for pediatric neurorehabilitation, Scopus and Pubmed Databases have been searched by following: PRISMA statements, PICOs classification, and PEDro scoring. Results: 43 studies have been collected and classified as follows: 11 feasibility studies; six studies proposing home-system solutions; nine studies presenting gamified robotic devices; nine longitudinal intervention trials; and eight reviews. Most of them rely on feasibility or pilot trials characterized by small sample sizes and short durations; different methodologies, outcome assessments and terminologies are involved; the explored spectrum of neurological conditions turns out to be scanty, mainly including the most common and wider debilitating groups of conditions in pediatric neurology: cerebral palsy, brain injuries and autism. Conclusion: Even though it highlights reduced possibilities of drawing evidence-based conclusions due to the above outlined biases, this systematic review raises awareness among pediatricians and other health professionals about gaming technologies. Such a review also points out a definite need of rigorous studies that clearly refer to the underlying neuroscientific principles