RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

From 7th European Conference on Rare Diseases and Orphan Products (ECRD 2014).Rare diseases; clinical practice guidelines; recommendations. RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the EC FP7. The project aims at improving clinical management of patients with rare diseases (RD) and at narrowing the existing gap in quality of healthcare among countries. Methods: RARE-Bestpractices (http://www.rarebestpractices.eu) involves 9 EU countries, including 15 partners from academic institutions, governmental bodies, patient organizations and networks, which will exploit the added value of integrating different contributions and viewpoints. The platform is developed involving both experts in RD research as well as experts in clinical practice guidelines (CPG) and systematic reviews. Results: Project expected outputs include: 1) identification of challenges to be considered in deriving high quality standards for CPG on RD; 2) transparent procedures and criteria for the evaluation of CPG and their collection in a publicly searchable database; 3) identification of notation criteria to improve user understandability and implementation of CPG; 4) production of mechanisms to assess RD clinical research needs; 5) development of training activities targeted to key stakeholders to disseminate process and tools for developing and evaluating CPG; 6) the publication of a new scientific journal (http://rarejournal.org). Discussion: RARE-Bestpractices addresses the demands from both patients and health care providers for updated and high quality CPG on RD. The project will meet the requirements laid down by to the Directive 2011/24/EU, which endorses EU MS to develop European Reference Networks (ERNs) for RD; in fact, one main criterion for ERNs should be the competence to produce CPG and actively disseminate them among Centers of Expertise.N

The Scientific Explorations for Deep-Sea Fishes in Brazil: The Known Knowns, the Known Unknowns, and the Unknown Unknowns

The deep sea is the largest and one of the most extreme environments on Earth. It is estimated that 10–15% of all fish species are dwelling in the deep sea, most of which have unique morphological and physiological adaptations. Biological expeditions to sample the deep ocean off Brazil started with the British HMS Challenger Expedition (1872–1876), followed by a few fishery stations made by the German RV Ernst Haeckel (1966) and the North-American MIV Oregon II (1957–1975), the cruises of the French RVs Marion Dufresne (1987) and Thalassa (1999, 2000), the Brazilian RV Atlântico Sul (1996–1999), the FV Diadorim and FV Soloncy Moura (1996–2002), OSB Astro Garoupa (2003), and, more recently, the American RV Luke Thomas and Seward Johnson (2009, 2011), the French RV Antea (2015, 2017), and the Brazilian RV Alpha Crucis. A total of 712 species of deep-sea fishes were recorded, including five species of Myxini, six species of Holocephali, 81 species of Elasmobrachii, and 620 species of Actinopteri. As in other parts of the world, the Brazilian deep-sea ichthyofauna struggles under severe anthropogenic impacts caused by the commercial fishing, and the extraction of oil and gas. The deep ocean is a delicate environment and its recovery is considerably slower than an equivalent in shallow water habitat. Therefore, increasing the research efforts is needed to avoid that part of its diversity disappear without our accurate knowledge.https://nsuworks.nova.edu/occ_facbooks/1102/thumbnail.jp