Utilize Health Data Basics tools to empower your community with health data | Join us for an exciting conversation about the FDA's Patient-Focused Drug Development initiative | Researchers targeting treatments that can eliminate damaging proteins
May 24, 2018
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All of Us to fund genome centers, study sharing of participant data
The All of Us Research Program expects to issue funding this fiscal year for up to two genome centers to generate genotype and whole genome sequence data from study participants' samples. Program directors also announced the impending launch of a pilot study to determine how to make data available to participants and ensure participants are educated about those data.
Bio-IT World (5/23) 
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News from FasterCures
Utilize Health Data Basics tools to empower your community with health data
Utilize Health Data Basics tools to empower your community with health data
Health data are all around us -- in our wearables, apps and new technologies. Not only are these data prevalent, but they also hold unlocked potential that could drive biomedical R&D innovation. However, patient involvement is the key to tap into the possibilities of the data. With funding through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award, FasterCures teamed up with the user-centered design agency GoInvo to work toward empowering patients with their health information. We've created a library of open-source tools that are useful for patient organizations, clinical research groups and anyone else looking to help patients deepen their understanding of health data. Visit the Health Data Basics site for more information about these powerful resources.
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Join us for an exciting conversation about the FDA's Patient-Focused Drug Development initiative
Join us for an exciting conversation about the FDA's Patient-Focused Drug Development initiative
On June 7, FasterCures will be hosting a webinar to discuss the FDA's Patient-Focused Drug Development initiative, a provision of the 2012 Food and Drug Administration Safety and Innovation Act. This act required the FDA to hold 20 meetings with the patient community over five years to hear directly from those with lived experience about the symptoms that most impact their lives and the variety of measures they take to manage their conditions. During this webinar, our panelists will share their experiences in working with patient communities to plan for these often-intense listening sessions, as well as what they've learned from them and how they are applying this information. Register today!
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Science and Technology
Researchers targeting treatments that can eliminate damaging proteins
Thalidomide and similar drugs being used to treat cancer work by using the body's cell-disposal system to eliminate damaging proteins. Now, researchers are focusing their efforts on developing such protein degradation methods to treat a wider range of diseases, including Alzheimer's and Parkinson's.
Scientific American online (5/23) 
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Experimental immunotherapy for pets' cancer holds promise for people
Experimental immunotherapy for pets' cancer holds promise for people
(Carl Court/Getty Images)
Researchers are developing personalized immunotherapies for cancer in dogs and cats using a portion of the tumor to create a vaccine that helps the body target cancer cells. The experimental treatment, based on human immunotherapy techniques, holds promise for pets as well as people, particularly when surgery, chemotherapy and radiotherapy are ineffective, says veterinarian Kristine Matz.
WTNH-TV (New Haven, Conn.) (5/21) 
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Finance and Economics
Ind. public health research nets $33M grant
The NIH has awarded a $33 million grant to the Indiana Clinical and Translational Sciences Institute. The funds will go toward improving public health throughout Indiana.
Inside Indiana Business (5/22) 
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Funds for development of AI for disease detection in UK to be announced
British Prime Minister Theresa May is expected to promise millions in funding for the development of artificial intelligence that can aid in early detection of cancer and chronic illnesses. May is expected to make the announcement today in a speech on the nation's industrial strategy.
The Guardian (London) (5/20) 
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Novo Nordisk's collaborations to strengthen its stem cell pipeline
Novo Nordisk has entered into multiple research partnerships to advance a cure for type 1 diabetes using stem cell therapies. The company is also working on stem cell treatments for Parkinson's and chronic heart failure, and is focused on accelerating research and development for "other serious chronic diseases," says Novo Nordisk's Mads Krogsgaard Thomsen.
Endpoints News (5/17) 
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    Utilize these FasterCures toolkits for information on building successful partnerships that accelerate research and innovation.
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Policy and Regulation
House approves "right-to-try" legislation
House approves "right-to-try" legislation
(Stefan Zaklin)
House lawmakers approved legislation that would allow terminally ill patients to bypass the FDA and request access directly from drugmakers to experimental drugs that have undergone early-stage clinical trials but have yet to receive approval from the FDA. The bill, which would not require drugmakers to provide the drugs, was passed by the Senate last year and now goes to President Donald Trump for his expected signature.
National Public Radio (5/22) 
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FDA developing guidance on gene therapy manufacturing, development
FDA Commissioner Scott Gottlieb is paving the way for drug developers to advance more gene therapies for various diseases by creating a framework that will guide gene therapy manufacturers. "The first therapeutic area we'll focus on is hemophilia, where factor production may be sufficient in some cases as a surrogate measure of benefit where a gene therapy product can potentially normalize factor production," Gottlieb said.
BioCentury (5/22),  Endpoints News (5/22) 
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Drugmakers request changes to Alzheimer's drug development rules
Drugmakers request changes to Alzheimer's drug development rules
(Sebastien Bozon/AFP/Getty Images)
Clinical trial enrollment for Alzheimer's disease drug candidates is too rigid, according to Eli Lilly and Co. and AstraZeneca in public comments. Clinical trial requirements should take into account the changing classifications of Alzheimer's disease and reconsider functional measures outcomes, the drugmakers say.
FDAnews (5/21) 
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Society and Ethics
Gathering medical records for research is more difficult than analyzing genomes
Researchers who want to link information on whether and how well cancer treatments have worked in the real world with genomic data have found that medical records are incredibly difficult to obtain, even when patients grant permission, and data in those records are not standardized. Instead of sending electronic medical records, hospitals and health systems often send faxes instead, and researchers must input data manually.
The New York Times (tiered subscription model) (5/21) 
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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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