A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies

Objective: Clinical care of rare and complex epilepsies is challenging, because evidence‐based treatment guidelines are scarce, the experience of many physicians is limited, and interdisciplinary treatment of comorbidities is required. The pathomechanisms of rare epilepsies are, however, increasingly understood, which potentially fosters novel targeted therapies. The objectives of our survey were to obtain an overview of the clinical practice in European tertiary epilepsy centers treating patients with 5 arbitrarily selected rare epilepsies and to get an estimate of potentially available patients for future studies. / Methods: Members of the European Reference Network for rare and complex epilepsies (EpiCARE) were invited to participate in a web‐based survey on clinical practice of patients with Dravet syndrome, tuberous sclerosis complex (TSC), autoimmune encephalitis, and progressive myoclonic epilepsies including Unverricht Lundborg and Unverricht‐like diseases. A consensus‐based questionnaire was generated for each disease. / Results: Twenty‐six of 30 invited epilepsy centers participated. Cohorts were present in most responding centers for TSC (87%), Dravet syndrome (85%), and autoimmune encephalitis (71%). Patients with TSC and Dravet syndrome represented the largest cohorts in these centers. The antiseizure drug treatments were rather consistent across the centers especially with regard to Dravet syndrome, infantile spasms in TSC, and Unverricht Lundborg / Unverricht‐like disease. Available, widely used targeted therapies included everolimus in TSC and immunosuppressive therapies in autoimmune encephalitis. Screening for comorbidities was routinely done, but specific treatment protocols were lacking in most centers. / Significance: The survey summarizes the current clinical practice for selected rare epilepsies in tertiary European epilepsy centers and demonstrates consistency as well as heterogeneity in the treatment, underscoring the need for controlled trials and recommendations. The survey also provides estimates for potential participants of clinical trials recruited via EpiCARE, emphasizing the great potential of Reference Networks for future studies to evaluate new targeted therapies and to identify novel biomarkers

Clinical Cell Therapy Guidelines for Neurorestoration (IANR/CANR 2017)

Cell therapy has been shown to be a key clinical therapeutic option for central nervous system diseases or damage. Standardization of clinical cell therapy procedures is an important task for professional associations devoted to cell therapy. The Chinese Branch of the International Association of Neurorestoratology (IANR) completed the first set of guidelines governing the clinical application of neurorestoration in 2011. The IANR and the Chinese Association of Neurorestoratology (CANR) collaborated to propose the current version "Clinical Cell Therapy Guidelines for Neurorestoration (IANR/CANR 2017)". The IANR council board members and CANR committee members approved this proposal on September 1, 2016, and recommend it to clinical practitioners of cellular therapy. These guidelines include items of cell type nomenclature, cell quality control, minimal suggested cell doses, patient-informed consent, indications for undergoing cell therapy, contraindications for undergoing cell therapy, documentation of procedure and therapy, safety evaluation, efficacy evaluation, policy of repeated treatments, do not charge patients for unproven therapies, basic principles of cell therapy, and publishing responsibility

Reducing the development gaps between regions in Poland with the use of European Union funds

The paper evaluates the processes of regional income convergence in Poland. This new research approach involves an attempt to assess the process of convergence from the point of view of development gaps. Six key development gaps were considered in the region of Eastern Poland, which is a singular case, significantly different from other regions. A dynamic panel data model was applied to investigate the impact of EU funds on the progress made towards closing these development gaps. Among the analysed development gaps, only the structural gap was not reduced in the period 2004–2015. Studies have also revealed the different impact of structural funds on each category of development gaps (a positive impact on reducing the regional transport accessibility gap and the investment gap, but negative – on reducing the innovation gap). Research has suggested the need for a change in the structure of using EU funds in the period 2014–2020 to favour stronger support for entrepreneurship and the creation of new jobs. Greater stimulation of the economic structure of peripheral regions has been proposed as the prerequisite for the future reduction in the discrepancies between regions and for the intensification of convergence. First published online 2 April 201

XLIV Konferencja Komitetu Nauk o Żywności i Żywieniu PAN: nauka, technologia i innowacje w żywności i żywieniu

Streszczenia w jęz. angielskimWydarzenie: XLIV Konferencja Komitetu Nauk o Żywności i Żywieniu PAN; Łódź, 3-4 lipca 2019 r.; http://pan.binoz.p.lodz.plOrganizator konferencji: Wydział Biotechnologii i Nauk o Żywności PŁ; Komitet Nauk o Żywności i Żywieniu PAN; Polskie Towarzystwo Technologów ŻywnościProjekt graficzny okładki: Grzelczyk, J.Projekt graficzny okładki: Klewicki, R.Skład: Oracz, J.Za treść zamieszczonych materiałów odpowiadają ich autorzy.Sesje Naukowe Komitetu Nauk o Żywności i Żywieniu Polskiej Akademii Nauk (KNoŻiŻ PAN) są organizowane przez krajowe ośrodki akademickie związane z naukami o żywności i żywieniu w dwuletnich cyklach. Sesje te stanowią największe w skali kraju forum prezentacji najnowszych osiągnięć naukowych i technologicznych w dziedzinie technologii żywności i żywienia człowieka, jak również wymiany poglądów oraz doświadczeń pracowników jednostek naukowych i przedstawicieli przemysłu spożywczego. Tematyka XLIV Sesji dotyczyć będzie szeroko pojętej problematyki związanej z oddziaływaniem żywności i odżywiania na zdrowie człowieka

GENE DOPING IN SPORT – PERSPECTIVES AND RISKS

In the past few years considerable progress regarding the knowledge of the human genome map has been achieved. As a result, attempts to use gene therapy in patients’ management are more and more often undertaken. The aim of gene therapy is to replace defective genes in vivo and/or to promote the long-term endogenous synthesis of deficient protein. In vitro studies improve the production of human recombinant proteins, such as insulin (INS), growth hormone (GH), insulin-like growth factor-1 (IGF-1) and erythropoietin (EPO), which could have therapeutic application. Unfortunately, genetic methods developed for therapeutic purposes are increasingly being used in competitive sports. Some new substances (e.g., antibodies against myostatin or myostatin blockers) might be used in gene doping in athletes. The use of these substances may cause an increase of body weight and muscle mass and a significant improvement of muscle strength. Although it is proven that uncontrolled manipulation of genetic material and/or the introduction of recombinant proteins may be associated with health risks, athletes are increasingly turning to banned gene doping. At the same time, anti-doping research is undertaken in many laboratories around the world to try to develop and refine ever newer techniques for gene doping detection in sport. Thanks to the World Anti-Doping Agency (WADA) and other sports organizations there is a hope for real protection of athletes from adverse health effects of gene doping, which at the same time gives a chance to sustain the idea of fair play in sport