|By PR Newswire||
|February 10, 2014 02:34 PM EST||
BETHESDA, Md., Feb. 10, 2014 /PRNewswire-USNewswire/ -- The Cystic Fibrosis Foundation will host a briefing on Capitol Hill to highlight how care delivery and drug development models in cystic fibrosis are an example for health policy experts seeking new ways to treat rare diseases and accelerate drug development.
The panel discussion, "Personalized Medicine and Quality, Coordinated Care: The Cystic Fibrosis Model," will focus on:
- Innovative and proven cystic fibrosis models for care delivery and drug development
- How these models can influence health care leaders and the greater rare disease community
- How the FDA advances treatments for CF and other rare diseases
- Terence R. Flotte, M.D., Dean, Provost and Executive Deputy Chancellor, University of Massachusetts Medical School
- Carlos Perez, M.D., Director, Cystic Fibrosis Care Center, Geisinger Medical Center
- Paul Negulescu, Ph.D., Vice President for Research, Vertex Pharmaceuticals
- Megan Stacy, a 29 year old with cystic fibrosis
- Moderator: Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation
- Congressional Sponsors: Senators Edward Markey (D-Mass.) and Kelly A. Ayotte (R-NH); Representatives Tom Marino (R-PA) and James McGovern (D-Mass.)
WHEN: Tuesday, February 11, 2014, 10:00 a.m. – 11:00 a.m.
WHERE: U.S. Capitol Visitor Center, Congressional Auditorium
- The Cystic Fibrosis Foundation's efforts to improve care and spur drug development have significantly improved life expectancy for those with CF. In the 1950s, children with CF didn't live to see elementary school – now many people with cystic fibrosis are living into their 30s, 40s and beyond.
- Thanks to the innovative CF drug development model pioneered by the Cystic Fibrosis Foundation, there is a robust pipeline of promising therapies that target the disease from every angle.
- Each CF patient is cared for by a coordinated team of providers, who specialize in the treatment of the disease via a nationwide network of CF Foundation-accredited care centers. The National Institutes of Health has cited the CF care center network as a model of effective and efficient health care delivery for a chronic disease.
- The CF Foundation Patient Registry was the first rare disease registry to publish comparative health outcomes for care centers to accelerate quality improvement.
About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. For more information, please visit www.cff.org.
SOURCE Cystic Fibrosis Foundation
DevOps is being widely accepted (if not fully adopted) as essential in enterprise IT. But as Enterprise DevOps gains maturity, expands scope, and increases velocity, the need for data-driven decisions across teams becomes more acute. DevOps teams in any modern business must wrangle the ‘digital exhaust’ from the delivery toolchain, "pervasive" and "cognitive" computing, APIs and services, mobile devices and applications, the Internet of Things, and now even blockchain. In this power panel at @...
Jan. 17, 2017 03:45 AM EST Reads: 2,708
Internet of @ThingsExpo, taking place June 6-8, 2017 at the Javits Center in New York City, New York, is co-located with the 20th International Cloud Expo and will feature technical sessions from a rock star conference faculty and the leading industry players in the world. @ThingsExpo New York Call for Papers is now open.
Jan. 17, 2017 03:45 AM EST Reads: 3,520
In his session at 19th Cloud Expo, Claude Remillard, Principal Program Manager in Developer Division at Microsoft, contrasted how his team used config as code and immutable patterns for continuous delivery of microservices and apps to the cloud. He showed how the immutable patterns helps developers do away with most of the complexity of config as code-enabling scenarios such as rollback, zero downtime upgrades with far greater simplicity. He also demoed building immutable pipelines in the cloud ...
Jan. 17, 2017 03:45 AM EST Reads: 3,366
SYS-CON Events announced today that Catchpoint Systems, Inc., a provider of innovative web and infrastructure monitoring solutions, has been named “Silver Sponsor” of SYS-CON's DevOps Summit at 18th Cloud Expo New York, which will take place June 7-9, 2016, at the Javits Center in New York City, NY. Catchpoint is a leading Digital Performance Analytics company that provides unparalleled insight into customer-critical services to help consistently deliver an amazing customer experience. Designed ...
Jan. 17, 2017 03:15 AM EST Reads: 6,211
Web Real-Time Communication APIs have quickly revolutionized what browsers are capable of. In addition to video and audio streams, we can now bi-directionally send arbitrary data over WebRTC's PeerConnection Data Channels. With the advent of Progressive Web Apps and new hardware APIs such as WebBluetooh and WebUSB, we can finally enable users to stitch together the Internet of Things directly from their browsers while communicating privately and securely in a decentralized way.
Jan. 17, 2017 03:00 AM EST Reads: 489
While many government agencies have embraced the idea of employing cloud computing as a tool for increasing the efficiency and flexibility of IT, many still struggle with large scale adoption. The challenge is mainly attributed to the federated structure of these agencies as well as the immaturity of brokerage and governance tools and models. Initiatives like FedRAMP are a great first step toward solving many of these challenges but there are a lot of unknowns that are yet to be tackled. In hi...
Jan. 17, 2017 02:15 AM EST Reads: 3,740
With the proliferation of both SQL and NoSQL databases, organizations can now target specific fit-for-purpose database tools for their different application needs regarding scalability, ease of use, ACID support, etc. Platform as a Service offerings make this even easier now, enabling developers to roll out their own database infrastructure in minutes with minimal management overhead. However, this same amount of flexibility also comes with the challenges of picking the right tool, on the right ...
Jan. 17, 2017 01:45 AM EST Reads: 5,212
The cloud market growth today is largely in public clouds. While there is a lot of spend in IT departments in virtualization, these aren’t yet translating into a true “cloud” experience within the enterprise. What is stopping the growth of the “private cloud” market? In his general session at 18th Cloud Expo, Nara Rajagopalan, CEO of Accelerite, explored the challenges in deploying, managing, and getting adoption for a private cloud within an enterprise. What are the key differences between wh...
Jan. 17, 2017 12:45 AM EST Reads: 6,010
One of the hottest areas in cloud right now is DRaaS and related offerings. In his session at 16th Cloud Expo, Dale Levesque, Disaster Recovery Product Manager with Windstream's Cloud and Data Center Marketing team, will discuss the benefits of the cloud model, which far outweigh the traditional approach, and how enterprises need to ensure that their needs are properly being met.
Jan. 16, 2017 11:45 PM EST Reads: 4,200
WebRTC has had a real tough three or four years, and so have those working with it. Only a few short years ago, the development world were excited about WebRTC and proclaiming how awesome it was. You might have played with the technology a couple of years ago, only to find the extra infrastructure requirements were painful to implement and poorly documented. This probably left a bitter taste in your mouth, especially when things went wrong.
Jan. 16, 2017 09:00 PM EST Reads: 7,446
Up until last year, enterprises that were looking into cloud services usually undertook a long-term pilot with one of the large cloud providers, running test and dev workloads in the cloud. With cloud’s transition to mainstream adoption in 2015, and with enterprises migrating more and more workloads into the cloud and in between public and private environments, the single-provider approach must be revisited. In his session at 18th Cloud Expo, Yoav Mor, multi-cloud solution evangelist at Cloudy...
Jan. 16, 2017 08:45 PM EST Reads: 4,580
When you focus on a journey from up-close, you look at your own technical and cultural history and how you changed it for the benefit of the customer. This was our starting point: too many integration issues, 13 SWP days and very long cycles. It was evident that in this fast-paced industry we could no longer afford this reality. We needed something that would take us beyond reducing the development lifecycles, CI and Agile methodologies. We made a fundamental difference, even changed our culture...
Jan. 16, 2017 08:00 PM EST Reads: 684
The proper isolation of resources is essential for multi-tenant environments. The traditional approach to isolate resources is, however, rather heavyweight. In his session at 18th Cloud Expo, Igor Drobiazko, co-founder of elastic.io, drew upon his own experience with operating a Docker container-based infrastructure on a large scale and present a lightweight solution for resource isolation using microservices. He also discussed the implementation of microservices in data and application integrat...
Jan. 16, 2017 06:45 PM EST Reads: 3,493
All organizations that did not originate this moment have a pre-existing culture as well as legacy technology and processes that can be more or less amenable to DevOps implementation. That organizational culture is influenced by the personalities and management styles of Executive Management, the wider culture in which the organization is situated, and the personalities of key team members at all levels of the organization. This culture and entrenched interests usually throw a wrench in the work...
Jan. 16, 2017 06:00 PM EST Reads: 414
Containers have changed the mind of IT in DevOps. They enable developers to work with dev, test, stage and production environments identically. Containers provide the right abstraction for microservices and many cloud platforms have integrated them into deployment pipelines. DevOps and containers together help companies achieve their business goals faster and more effectively. In his session at DevOps Summit, Ruslan Synytsky, CEO and Co-founder of Jelastic, reviewed the current landscape of Dev...
Jan. 16, 2017 05:00 PM EST Reads: 4,026