miércoles, 20 de septiembre de 2017

Consumer Updates > The FDA Encourages New Treatments for Sickle Cell Disease

Consumer Updates > The FDA Encourages New Treatments for Sickle Cell Disease

Sickle cell disease is the most common inherited blood disorder in the United States. New treatments are needed to prevent and treat its serious complications. That’s why the U.S. Food and Drug Administration is working with patients and stakeholders to help.

Read the article, and see the related video, to learn how the FDA is encouraging innovation.

New Articles From Orphanet Journal of Rare Diseases

New Articles For BioMed Central:

Orphanet Journal of Rare Diseases

The following new articles have just been published in Orphanet Journal of Rare Diseases

RESEARCH

The impact of lipoprotein lipase deficiency on health-related quality of life: a detailed, structured, qualitative study

Sasi Neelamekam, See Kwok, Rachel Malone, Anthony S. Wierzbicki and Handrean Soran
Orphanet Journal of Rare Diseases 2017, 12:156 | Published on: 19 September 2017

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LANZAN UN TRATAMIENTO PARA RESTAURAR LA FUNCIÓN INTESTINAL EN EL SÍNDROME DEL INTESTINO IRRITABLE

Para descargar imágenes pincha aquí
NOTA DE PRENSA CORPORATIVA
Norgine lanza GELSECTAN®
LANZAN UN TRATAMIENTO PARA RESTAURAR LA FUNCIÓN INTESTINAL EN EL SÍNDROME DEL INTESTINO IRRITABLE
Madrid, 20 de septiembre de 2017. Laboratorios Norgine De España, S.L.U., una filial de Norgine B.V., ha lanzado GELSECTAN®, un tratamiento para restaurar la función intestinal en aquellos pacientes que sufren de alteraciones debido al síndrome del intestino irritable (SII). También está indicado en hipersensibilidad intestinal o tras la ingesta de fármacos para aliviar y prevenir síntomas como diarrea crónica o recidivante, tensión abdominal, dolor, hinchazón y flatulencia. GELSECTAN® es un producto sanitario de libre dispensación, formulado con xiloglucano, proteínas vegetales y xilo-oligosacáridos (XOS) que actúan como agentes protectores de la mucosa intestinal, reducen su permeabilidad aumentada y limitan la inflamación de la misma.
El SII “es un trastorno funcional digestivo crónico cuyo tratamiento a veces puede resultar complejo por la heterogeneidad de la sintomatología y el desconocimiento de su causa”, afirma el doctor Enrique Rey, jefe de Servicio de Aparato Digestivo del Hospital Universitario Clínico San Carlos. Uno de los mecanismos que participa en su fisiopatología es un aumento de la permeabilidad de la barrera intestinal1 que se asocia a cambios en la integridad de las uniones intercelulares estrechas. Sus principales síntomas son el dolor o molestia abdominal y alteraciones en el hábito deposicional2, “que produce una peor calidad de vida a los pacientes con respecto a la población general3, y supone un impacto económico muy alto, conlleva un mayor uso de los recursos sanitarios y un gran absentismo laboral”, comenta.
Uno de los componentes de GELSECTAN®, el xiloglucano, actúa a nivel de la mucosa del tracto gastrointestinal como un agente protector gracias al efecto de bio-barrera. “Esto disminuye la entrada de patógenos, toxinas y bacterias a través de las uniones intercelulares, lo que explica sus propiedades antidiarreicas4”, indica el doctor Fermín Mearín, director del Departamento de Gastroenterología de la Cínica Teknon de Barcelona. Además, refuerza las uniones intercelulares y evita así la permeabilidad celular causada por la bacteria E.coli4. Por su parte, las proteínas vegetales forman una capa dentro de la luz intestinal que fortalece a su vez la biodisponibilidad del xiloglucano5. “La combinación de ambos ayuda a prevenir la infiltración intestinal inducida por lipopolisacáridos y reduce la inflamación posterior6”, añade. En cuanto a los xilo-oligosacáridos, este especialista señala que, “incrementan la cantidad de Bifidobacterium7, lo que permite proteger la mucosa y beneficiar a la microbiota intestinal”.
La presentación de GELSECTAN® es en blisters de 60 comprimidos, que, en función de la gravedad de los síntomas, se toma entre una y dos dosis antes del desayuno y la cena, pero deben ajustarse a las necesidades individuales de cada paciente.
Para Tatiana Vilchez, directora médico de Norgine Iberia, “se trata de una nueva opción terapéutica para ayudar a manejar los síntomas de diarrea y dolor en pacientes con SII en los que tienen una disminución marcada de la calidad de vida por sus trastornos digestivos”.
Sobre Norgine
Norgine es una empresa farmacéutica especializada líder en Europa con una presencia comercial directa en los principales mercados europeos. En 2016 Norgine tuvo unos ingresos totales de €368 millones. Norgine contrata a más de 1.000 empleados entre sus operaciones comerciales, de desarrollo y producción; y controla todos los aspectos de desarrollo de producto, producción, marketing, venta y distribución.
Norgine está especializada en gastroenterología, hepatología, cáncer y cuidados paliativos.
Norgine tiene su sede en Holanda. Norgine es propietaria de una instalación I+D en Hengoed, Gales, y de dos plantas de producción en Hengoed, Gales, y Dreux, Francia.
Para información adicional por favor visite http://www.norgine.com
En 2012, Norgine fundó Norgine Ventures, que apoya a las empresas innovadoras de salud a través de la provisión de financiamiento de deuda en Europa y  Estados Unidos. Para más información, visitewww.norgineventures.com.
NORGINE y su logo son marcas registradas del grupo de compañías de Norgine.
GELSECTAN es una marca comercial de Noventure S.L., usada bajo licencia por el grupo de empresas Norgine.
Contacto con los medios:
Carlos Mateos/ Rocío Jiménez. COM SALUD
Tel.: 91223 66 78/ 675 987 723
Síguenos @norgine

Referencias
1. Salvo-Romero E, Alonso-Cotoner C, Pardo-Camacho C et al. Función Barrera intestinal y su implicación en enfermedades digestivas. Rev Esp Enferm Dig (2015);107:686-696.

2. Mearin F. Síndrome de intestino irritable: Nuevos criterios de Roma III. Med Clin (2007);128(9):335-43.).

3. Grupo de trabajo de la guía de práctica clínica sobre el síndrome de intestino irritable. Manejo del paciente con síndrome del intestino irritable. Barcelona: Asociación Española de Gastroenterología, SEMFYC y Centro Cochrane Iberoamericano (2005).

4.  Bueno L, Theodorou V, Sekkal S. Xyloglucan: a new agent to protect the intestinal mucosa and to prevent bacterially- mediated alteration of tight junction permeability. October 2014 : volume 2 : supplement 1. p1675.

5. Gnessi L, Bacarea V, Marustei M, Piqué N. Xyloglucan for the treatment of acute diarrea: results of a randomized, controlled, open-label, parallel group, multicenter, national clinical trial. BMC Gastroenteroplogy (2015):15:153.

6. Eutamene H et al. Undissociated gelatin tannate and xyloglucan prevent gut leakiness and mucosal inflammation induced by lps: insights in the mechanism of action. United European Gastroenterology Journal 2016;4, (5s),p1449:a651.

7. Alexea O. et al. The combination of oligo- and polysaccharides and reticulated protein for the control of symptoms in patients with irritable bowel syndrome: results of a randomised, placebo-controlled, double-blind, parallel group, multicentre clinical trial. United European Gastroenterology Journal 2016,4(3):455-465.

ES/GEL/0817/0030. Fecha de revisión: 09/08/2017

What’s destroying the kids – smartphones or distracted parents? |September 20, 2017|MercatorNet|

What’s destroying the kids – smartphones or distracted parents?
|September 20, 2017|MercatorNet|




What’s destroying the kids – smartphones or distracted parents?

The desperate plight of generation iPhone.
Carolyn Moynihan | Aug 15 2017 | comment 3 



We all know that kids use their phones too much. They are too much on Snapchat or texting their friends. They would take their phones to bed if no-one stopped them and never sleep if the bodily need for slumber did not overpower them. They are exposed to cyberbullying and tempted to over-expose themselves.
Yet perhaps things are worse than we thought. Writing in the September issue of The Atlantic magazine, psychologist Jean Twenge takes worry about kids, phones and social media to a whole new level, asking whether the technology has “destroyed a generation”.
Is it that bad? And if so, exactly how has this happened? Kids are not actually born with a smartphone in their hand, and if they have one by the time they are 13, someone has bought it for them. And someone has to be cooking their meals while they are in their rooms destroying themselves. Maybe those someones are the generation we should be looking at.
But Twenge is talking about young people, those who have grown up (or perhaps have failed to grow up) in the era of the iPhone. Born between 1995 and 2012, the oldest members of “iGen” were young adolescents when the iPhone was launched in 2007. Three years later came the iPad.
With these devices social media exploded, causing “an earthquake of a magnitude we’ve not seen in a very long time, if ever,” says Twenge, an expert on generational change.
Around 2012 she “noticed abrupt shifts in teen behaviours and emotional states” reflected in national data she was studying, which includes Monitoring the Future, an annual survey funded by the National Institute on Drug Abuse. What she saw, in broad strokes, was kids who are homebodies, but disengaged from parents and even friends, unless through incessant social media activity. They are physically safer, but lonelier and in poorer mental health than the generation before them at the same age.
“More comfortable in the bedrooms than in a car or at a party, today’s teens are physically safer than they have ever been. They’re markedly less likely to get into a car accident and, having less of a taste for alcohol than their predecessors, are less susceptible to drinking’s attendant ills.”
They are also less likely to date and, as a consequence, much less likely to be sexually active. The number of sexually active teens in ninth grade (ages 14-15) has dropped by 40 percent since 1991, and the teen birth rate in 2016 was down 67 percent on 1991.
So far, so good, although Twenge hints that living more dangerously would be more grown up.
“Psychologically, however, they are more vulnerable than Millennials were: Rates of teen depression and suicide have skyrocketed since 2011. It’s not an exaggeration to describe iGen as being on the brink of the worst mental-health crisis in decades. Much of this deterioration can be traced to their phones.”
By “much” Twenge seems to mean "more than other factors" such as parenting styles, school curricula and culture, which she acknowledges as change agents.
Parents are, not surprisingly, implicated in the behavioural changes she highlights.
Today’s teenagers are, on average, more dependent on their parents than older Millennials and Generation X. They are at home a lot more and are not learning to drive, so when they do go out they are likely to be chauffeured by (a willing) mom or dad.
They are less likely to have part-time jobs and their own money to spend, but their parents prefer it that way so that the kids focus on study and good grades, to arm themselves for jobs in the information economy.
However, they don’t, in fact, study more, and they spend about the same amount of time on clubs, sports and exercise. They have more leisure time but they do not seem to be closer to their parents than the cohorts before them. “I’ve seen my friends with their families,” says Twenge’s representative teen (13-year-old “Athena” from Houston, Texas), “they don’t talk to them. They just say ‘Okay, okay, whatever’ while they’re on their phones. They don’t pay attention to their family.”
Hmmm. So whom are they close to? Presumably the friends they spend nearly all their free time with – more often on their phones (some more than 10 hours a week) than hanging out in some real place. Commenting on The Atlantic article at Slate, Lisa Guernsey says:
“My daughters are on their phones when they wake up, throughout the day, and into the night. My 13-year-old won’t go to bed until she has Snapchatted a silly photo of herself to multiple friends to keep up her streaks. My 15-year-old’s phone is constantly vibrating from messages coming through from group chats.”
And yet many of them are not happy. 
Twenge’s parsing of the data shows that young people who spend a lot of time on their phones and less time actually hanging out with their friends tend to be lonely. And with loneliness comes depression and even suicide, both of which have increased among teens who are heavy users of social media.
True, we are not talking about causality here – it could be that lonely teens turn to phones to feel connected – but it is plausible that phones are the culprit. One reason, says Twenge, is that when teens do get together in person, “they document their hangouts relentlessly… Those not invited to come along are keenly aware of it. Accordingly, the number of teens who feel left out has reached all-time highs across age groups.”
Social media are also a platform for public failure, especially for girls (not getting enough likes for your post) ,and cyberbullying, often in the form of ostracising other girls.
Feeding these negative trends is the sheer sleep deprivation among kids who go to bed with their phone beside them or under their pillow.
Yes, things are very bad, but there is an obvious remedy. It is time that those accomodating parents who drive their kids everywhere and don't send them out to earn their own pocket money got authoritative about screen time: “more parents should be telling their kids to put down their phones” and teaching them moderation, says Twenge.
But it's precisely here, according to one critique of Twenge’s thesis, that we run into the real problem: she has nailed the wrong generation. If the kids are disengaged, says JSTOR technology writer Alexandra Samuel, it’s because parents themselves are too busy online. Distracted by screens themselves, they fall into “minimal parenting” – a style where mere control takes over from encouragement.
“This observation offers a competing explanation for the recent declines in adolescent independence that Twenge observes. Fostering independence takes work: someone has to teach the kid to drive, show them how to get to the mall, maybe prod them to make some friends and get outside. We may parody the work of parenting as a set of rules and consequences, but the work of encouraging positive behavior is just as (if not more important) than sanctioning the negative.”
(Samuel is also critical of Twenge’s interpretation of the data, arguing that the picture is not so bleak.)
Well, the first way kids are encouraged along the path of moderation and balance is by example. So parents have to be doing all the things they want their children to do: keeping phone use to a bare minimum during family time, and social media sharing to a specific, limited time each day or week; being available to talk to each of the family; meeting with friends; being involved in community service; keeping up with events in the wider world and reading to understand more…
It surely means a struggle – against peer pressure, against unscrupulous marketing and social inertia – and parents need a lot more support for their basic mission.
But if Athena spent so much of her summer holidays texting friends or on Snapchat that “My bed has, like, an imprint of my body,” it’s not the fault of her phone; there is something seriously missing from the parenting department in her home.
Carolyn Moynihan is deputy editor of MercatorNet.

MercatorNet
September 20, 2017


November 7 marks the 100th anniversary of the Russian Revolution (or October 25 in the old Julian Calendar). On that day the Bolsheviks stormed the Winter Palace in Petrograd (St Petersburg) and launched their take-over of the Russian government. This led to a five-year civil war, followed by the iron hand of totalitarianism under Lenin and Stalin and their successors.

It seems that most of the world, even Russia, would prefer to forget the failed experiment of Communism. The centenary is seldom mentioned in the media and even amongst think tanks and universities. But it is imperative that we learn from our mistakes. In many subtle ways the world still bears the burden of Communist ideology and praxis. In the coming weeks we will present reflections on the impact of the Russian Revolution. Today Paul Kengor discusses the Soviet war on religion




Michael Cook
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