Register for June 9 webinar on patient registries | Study reveals disparities in how gene tests are interpreted by labs | PatientsLikeMe seals partnership deal with Boston provider
May 28, 2015
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FasterCures helps organizations boost outreach with online seminars
FasterCures uses Web-based seminars, or webinars, as part of its overall outreach strategy, hosting up to eight webinars each year with some 500 participants in each. Careful planning and follow-up are key to success, and participants are asked to submit questions in advance, speakers participate in planning conference calls and staff create storyboards. Afterward, FasterCures posts a summary of the webinar online and asks participants for feedback. "Now we have a really good sense of what our audience wants to hear," said FasterCures Communications Director Gillian Parrish. CQ Roll Call Connectivity (5/19)
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News from FasterCures
Register for June 9 webinar on patient registries
"Building patient-ready communities: A closer look at patient registries," will take place on Tuesday, June 9, from 1 p.m. to 2 p.m. Leaders from FasterCures, the Patient-Centered Outcomes Research Institute and PatientCrossroads will discuss the current landscape and potential of patient registries to advance medical progress and bridge the gaps among patient communities, drug developers, providers, payers and regulators. This free webinar is part of FasterCures' webinar series designed to spotlight innovative approaches to disease research. Learn more.
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Science and Technology
Study reveals disparities in how gene tests are interpreted by labs
At least 415 genetic variants were interpreted differently by different laboratories, with some saying a given variant raises risk for disease and others saying the effect is unknown or there is no associated disease risk, researchers report in the New England Journal of Medicine. More than 300 labs and some private companies contribute anonymized patient data to the ClinVar database, and researchers studying the database tracked more than 172,000 variants in close to 23,000 genes. Wrongful interpretations of genetic data can lead patients to seek unneeded treatment or miss an opportunity to mitigate risk. ABC News/The Associated Press (5/27)
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PatientsLikeMe seals partnership deal with Boston provider
Partners HealthCare is collaborating with PatientsLikeMe to offer patients and care teams access to data available on PatientsLikeMe's platform through Partners' Patient Gateway. The collaboration will also include educational efforts to teach care providers and patients how to use the system. The PatientsLikeMe platform was designed to offer online communities where patients with the same conditions can share experiences and monitor their symptoms, treatment progress and side effects. (5/26)
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Experts develop noninvasive procedure to remove bone tumors in children
Children with osteoid osteoma, a benign leg tumor, could have their tumors destroyed through the use of a magnetic resonance imaging-guided high-intensity focused ultrasound machine. The procedure is under clinical study at the Children's National Health System led by Dr. Karun Sharma, an interventional radiologist. WTOP-FM (Washington, D.C.) (5/27)
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Finance and Economics
More charities invest like VCs
Nonprofit organizations are increasingly investing in for-profit startups, aiming to bring forth world-changing products and collect a share of the profits. A few of these deals have produced big payoffs, but most net the charity a minimal return or nothing at all. Fortune (5/27)
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VCs prefer biotech over medtech
Venture capital investors continue to aggressively pursue deals with biotech startups, while interest in medical devices seems to be flagging. However, the public markets have embraced medical device companies. (5/21)
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Juno, Editas sign deal worth up to $737M to develop cancer treatments
Juno Therapeutics has partnered with Editas Medicine to develop cancer therapies using its anti-cancer treatments and Editas' gene-editing platform. Under the terms of the agreement, Editas will receive an upfront payment of $25 million as well as $22 million to support research, plus up to $690 million in milestone fees for the three programs included in the collaboration. The Boston Globe (tiered subscription model) (5/27)
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Policy and Regulation
UN members OK plan to fight antibiotic resistance
The member states of the United Nations gave their unanimous support to the World Health Organization's plan to address antibiotic drug resistance problems. Among the WHO's objectives are monitoring antibiotic resistance, enhancing efforts to control antibiotic use and developing ways to boost investments in new antibiotics. The New York Times (tiered subscription model) (5/25)
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Society and Ethics
CDC recommends immediate treatment to patients with HIV
The CDC issued a recommendation Wednesday that antiretroviral medications be given to patients with HIV as soon as the infection has been diagnosed. The recommendation was made after federal health authorities decided to stop an HIV treatment clinical study when preliminary findings showed that patients who were treated immediately have a 53% less chance of developing AIDS or dying from the condition than participants who waited to receive the drugs. The New York Times (tiered subscription model) (5/27)
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Experts warn multigene panels lack clinical support, utility
A coalition of 17 genetics experts argues that gene panel tests aren't ready for widespread use because too little is known about many of the genes included in the tests, particularly the level of risk associated with variants and what patients should do with that information. "It's been pretty widely assumed that all of these genes on all of these panels have clear clinical validity," said study co-author Dr. Susan Domchek, a breast cancer expert. "The point of this article was to say, we're not finished with that step yet." Reuters (5/27), New England Journal of Medicine online (5/27)
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FasterCures is an action tank that works across sectors and diseases to improve the effectiveness and efficiency of the medical research enterprise. FasterCures, a center of the Milken Institute, is nonpartisan and independent of interest groups.
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