Welcome!

News Feed Item

PCORI Appoints First Members of New Advisory Panel on Rare Disease

Panel's Expertise Will Guide Funding Priorities and Community Engagement

WASHINGTON, March 25, 2014 /PRNewswire-USNewswire/ -- The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved 13 people as members of PCORI's new Advisory Panel on Rare Disease. It is one of two new advisory panels for which the Board approved members at its meeting today; the other focuses on clinical trials.

The diverse group of panelists will apply their experience and expertise to advising PCORI on its research priorities in the area of rare disease, as well as on engaging with the rare disease research community. Rare diseases are defined in the United States as conditions that occur in fewer than 200,000 people.

"Although they're called rare, these are conditions that collectively affect millions of Americans and their families and they merit our attention as we seek to support comparative effectiveness research on patients' most pressing unanswered questions," said Bryan Luce, PhD, MBA, PCORI's Chief Science Officer. "We're pleased that so many qualified individuals wanted to lend their experience and deep knowledge to ensure that we support high-quality research on rare conditions and we'll benefit greatly from the insights of this stellar group of individuals."

The new panelists represent a range of stakeholder groups and perspectives, including people with rare diseases, family caregivers, clinicians, drug and device makers, and researchers, among others. More than a third represent patients and patient advocates. A list of the new panelists, with brief biographies and conflict of interest disclosures, is available on PCORI's website.

The panel members and three alternates were selected from 129 applicants. PCORI staff thoroughly evaluated every candidate's personal experience and qualifications in the area of rare disease as well as their ability to contribute to the panel's advisory tasks and responsibilities. More information about PCORI's process for reviewing and recommending advisory panel nominees is available on its website.

The panel's composition will enable it to carry out a variety of tasks, including providing input on the research needs of the rare disease community and advising on strategies for disseminating study findings.  However, given that the National Institutes of Health lists more than 6,800 rare conditions, the panel will assist PCORI in identifying experts to serve on ad hoc advisory panels as needed to consider research issues related to particular conditions. More details about the panel's responsibilities and activities can be found in its charter.

PCORI's authorizing legislation allows it to appoint permanent or ad hoc advisory panels to assist it in identifying research priorities and establishing its research agenda and specifically called on the institute to establish an expert panel on rare disease. While they are not policy-making groups, their advice and recommendations inform the work and decisions of PCORI's staff, Board and committees.

The panel members have been notified of their appointment to the panel and are expected to respond to their invitations today. If needed, alternate members will be selected from the list also approved by the Board today. The Advisory Panel on Rare Disease will convene for its first meeting on Wednesday, April 30, in Washington, D.C.

About PCORI
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

SOURCE Patient-Centered Outcomes Research Institute (PCORI)

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

Latest Stories
Cloud-based NCLC (No-code/low code) application builder platforms empower everyone in the organization to quickly build applications and executable processes that broaden access, deepen collaboration, and enhance transparency for all team members. Line of business owners (LOBO) and operations managers know best their part of the business and their processes. IT departments are beginning to leverage NCLC platforms to empower and enable LOBOs to lead the innovation, transform the organization, an...
The IETF draft standard for M2M certificates is a security solution specifically designed for the demanding needs of IoT/M2M applications. In his session at @ThingsExpo, Brian Romansky, VP of Strategic Technology at TrustPoint Innovation, will explain how M2M certificates can efficiently enable confidentiality, integrity, and authenticity on highly constrained devices.
In the world of DevOps there are ‘known good practices’ – aka ‘patterns’ – and ‘known bad practices’ – aka ‘anti-patterns.' Many of these patterns and anti-patterns have been developed from real world experience, especially by the early adopters of DevOps theory; but many are more feasible in theory than in practice, especially for more recent entrants to the DevOps scene. In this power panel at @DevOpsSummit at 18th Cloud Expo, moderated by DevOps Conference Chair Andi Mann, panelists will dis...
See storage differently! Storage performance problems have only gotten worse and harder to solve as applications have become largely virtualized and moved to a cloud-based infrastructure. Storage performance in a virtualized environment is not just about IOPS, it is about how well that potential performance is guaranteed to individual VMs for these apps as the number of VMs keep going up real time. In his session at 18th Cloud Expo, Dhiraj Sehgal, in product and marketing at Tintri, will discu...
trust and privacy in their ecosystem. Assurance and protection of device identity, secure data encryption and authentication are the key security challenges organizations are trying to address when integrating IoT devices. This holds true for IoT applications in a wide range of industries, for example, healthcare, consumer devices, and manufacturing. In his session at @ThingsExpo, Lancen LaChance, vice president of product management, IoT solutions at GlobalSign, will teach IoT developers how t...
The pace of innovation, vendor lock-in, production sustainability, cost-effectiveness, and managing risk… In his session at 18th Cloud Expo, Dan Choquette, Founder of RackN, will discuss how CIOs are challenged finding the balance of finding the right tools, technology and operational model that serves the business the best. He will discuss how clouds, open source software and infrastructure solutions have benefits but also drawbacks and how workload and operational portability between vendors...
When it comes to IoT in the enterprise, namely the commercial building and hospitality markets, a benefit not getting the attention it deserves is energy efficiency, and IoT's direct impact on a cleaner, greener environment when installed in smart buildings. Until now clean technology was offered piecemeal and led with point solutions that require significant systems integration to orchestrate and deploy. There didn't exist a 'top down' approach that can manage and monitor the way a Smart Buildi...
So, you bought into the current machine learning craze and went on to collect millions/billions of records from this promising new data source. Now, what do you do with them? Too often, the abundance of data quickly turns into an abundance of problems. How do you extract that "magic essence" from your data without falling into the common pitfalls? In her session at @ThingsExpo, Natalia Ponomareva, Software Engineer at Google, will provide tips on how to be successful in large scale machine lear...
You think you know what’s in your data. But do you? Most organizations are now aware of the business intelligence represented by their data. Data science stands to take this to a level you never thought of – literally. The techniques of data science, when used with the capabilities of Big Data technologies, can make connections you had not yet imagined, helping you discover new insights and ask new questions of your data. In his session at @ThingsExpo, Sarbjit Sarkaria, data science team lead ...
SYS-CON Events announced today that Peak 10, Inc., a national IT infrastructure and cloud services provider, will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. Peak 10 provides reliable, tailored data center and network services, cloud and managed services. Its solutions are designed to scale and adapt to customers’ changing business needs, enabling them to lower costs, improve performance and focus inter...
Digital payments using wearable devices such as smart watches, fitness trackers, and payment wristbands are an increasing area of focus for industry participants, and consumer acceptance from early trials and deployments has encouraged some of the biggest names in technology and banking to continue their push to drive growth in this nascent market. Wearable payment systems may utilize near field communication (NFC), radio frequency identification (RFID), or quick response (QR) codes and barcodes...
SYS-CON Events announced today that Ericsson has been named “Gold Sponsor” of SYS-CON's @ThingsExpo, which will take place on June 7-9, 2016, at the Javits Center in New York, New York. Ericsson is a world leader in the rapidly changing environment of communications technology – providing equipment, software and services to enable transformation through mobility. Some 40 percent of global mobile traffic runs through networks we have supplied. More than 1 billion subscribers around the world re...
We're entering the post-smartphone era, where wearable gadgets from watches and fitness bands to glasses and health aids will power the next technological revolution. With mass adoption of wearable devices comes a new data ecosystem that must be protected. Wearables open new pathways that facilitate the tracking, sharing and storing of consumers’ personal health, location and daily activity data. Consumers have some idea of the data these devices capture, but most don’t realize how revealing and...
The demand for organizations to expand their infrastructure to multiple IT environments like the cloud, on-premise, mobile, bring your own device (BYOD) and the Internet of Things (IoT) continues to grow. As this hybrid infrastructure increases, the challenge to monitor the security of these systems increases in volume and complexity. In his session at 18th Cloud Expo, Stephen Coty, Chief Security Evangelist at Alert Logic, will show how properly configured and managed security architecture can...
Many private cloud projects were built to deliver self-service access to development and test resources. While those clouds delivered faster access to resources, they lacked visibility, control and security needed for production deployments. In their session at 18th Cloud Expo, Steve Anderson, Product Manager at BMC Software, and Rick Lefort, Principal Technical Marketing Consultant at BMC Software, will discuss how a cloud designed for production operations not only helps accelerate developer...