For more: | Are you a researcher looking to work with patient organizations? Join Patients Count Network. | Discuss everything from blockchain to patient registries at P4C San Francisco
October 17, 2017
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Stakeholders brainstorm how to boost patient involvement in clinical trials
Participants in a recent FDA Patient Engagement Advisory Committee meeting discussed barriers to increasing patient engagement in medical device clinical trials. Ideas for overcoming common barriers included creating a framework to improve public understanding of the clinical trial process, using plain language in clinical trial descriptions and consent forms, improving sponsors' engagement with community institutions and designing trials to be less burdensome for participants.
Regulatory Focus (10/16),  MedPage Today (free registration) (10/13) 
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  • For more:
    Watch this discussion from P4C Boston about the challenges of clinical trial recruitment and retention.
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News from FasterCures
Are you a researcher looking to work with patient organizations? Join Patients Count Network.
Are you a researcher looking to work with patient organizations? Join Patients Count Network.
The new Investigator Portal is officially live on the Patients Count Network. Researchers may apply for an account, which allows them to view individual organization and aggregated survey responses. The portal is also equipped with an advanced search to query data from organization profiles that meet multiple levels of criteria. Organizations that have joined the Patients Count Network share data about their disease focus, collaborative initiatives, research assets and more. We hope that investigators will use the network to develop stronger relationships and create opportunities for engagement with patient organizations. Join today!
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Discuss everything from blockchain to patient registries at P4C San Francisco
Discuss everything from blockchain to patient registries at P4C San Francisco
Kick off Partnering for Cures with an opportunity to network with peers who share your goals and interests. Our breakfast roundtables bring together meeting participants across disciplines and sectors to discuss specific topics in biomedical R&D. Make the most of this opportunity to get involved, ask questions and propose solutions to common R&D challenges. Register now for P4C San Francisco!
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Science and Technology
Tissue genotype study raises thorny ethics questions
Researchers have been collecting tissue samples from deceased organ donors for the Genotype-Tissue Expression project, which aims to create an activity map of coding and noncoding genetic variants in different tissues. The samples are obtained with families' consent, but some bioethicists have asked whether grieving families fully understand the scope of the project and suggest that families should be entitled to receive more feedback.
Nature (free content) (10/11) 
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Apps are the future of DNA sequencing, experts predict
Trends in genetic sequencing will be driven not by innovative technology, but by innovative applications, write three experts in the field of genetics and genomics. A lack of analysis and interpretation tools impedes the progress of genomics, but "just as new informatics approaches and massive data sets have dramatically improved language translation and image recognition, we predict that massive DNA-sequence data sets coupled with phenotypic information will enable researchers to deduce the biological functions encoded within genome sequences," they write.
Nature (free content) (10/11) 
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NIH, 11 drugmakers collaborate on cancer therapy research
NIH, 11 drugmakers collaborate on cancer therapy research
The National Institutes of Health will collaborate with 11 drug companies in a $215 million public-private partnership to advance studies on immunotherapy research. The five-year Partnership for Accelerating Cancer Therapies will be devoted to identifying, developing and validating chemical signatures in the body to help determine which patients would benefit from cancer treatments.
Reuters (10/12),  STAT (tiered subscription model) (10/12) 
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Finance and Economics
VCs, entrepreneurs aim to create a new kind of stock exchange
Prominent Silicon Valley startup founders and venture capital investors plan to apply by the end of the year for regulatory approval of what they call the Long-Term Stock Exchange, which they say will free companies from Wall Street's focus on short-term earnings. The exchange will have rules that encourage a long-term view, including a provision that gives shares more voting power the longer they are held by the same investor.
The Wall Street Journal (tiered subscription model) (10/16) 
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Stakeholders explore ways to pay for expensive gene therapies
Former FDA Commissioner Mark McClellan, now at the Duke-Margolis Center for Health Policy, is bringing together payers and gene-therapy makers to explore novel reimbursement models for forthcoming therapies that could cost $1 million or more.
STAT (tiered subscription model) (10/13) 
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  • For more:
    Explore FasterCures Consortia-pedia Catalogue for additional examples of collaborative research efforts.
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Policy and Regulation
EU data privacy rules are extraterritorial, expert says
The European Union's General Data Protection Regulation, which protects individual privacy rights and freedoms, goes into effect May 25 and applies beyond EU member states to any company or organization that controls or processes data on EU citizens, says attorney and privacy rights expert Debra Diener. The GDPR prohibits tracking of individuals online to create profiles for predictive analytics and gives individuals the right to control and transfer data as well as the right to know when their data have been compromised, among other provisions.
Bio-IT World (10/10) 
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AMIA supports proposed delay of changes to Common Rule
HHS' proposed year-long delay of revisions to the Common Rule, or the Federal Policy for the Protection of Human Subjects, is necessary, as the changes are needed "to improve discovery of new health insights and advance health care transformation," according to the American Medical Informatics Association. Health care organizations are advised to make sure they understand how the updated Common Rule would affect particular areas of research when it comes to health data security.
Health IT Security (10/16) 
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Society and Ethics
Public health experts outline measures for fighting the opioid epidemic
Public health experts outline measures for fighting the opioid epidemic
(John Moore/Getty Images)
Prohibiting ultra-high-dosage painkillers, restricting the marketing of opioids to treat chronic pain, improving access to alternative pain treatments, and intensifying efforts to squelch the supply of heroin and fentanyl are some steps the government could take to combat the opioid epidemic, according to former CDC Director Thomas Frieden and opioid policy researcher Andrew Kolodny. Frieden and Kolodny call for a twofold focus on "prevention of addiction among people not currently addicted, and treatment and risk reduction to prevent overdose and death among the millions of individuals in the United States now addicted."
The Washington Post (tiered subscription model) (10/12) 
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Debate over spread of drug-resistant malaria worries researchers
Debate over spread of drug-resistant malaria worries researchers
(Celia Lebur/AFP/Getty Images)
A study published in the journal The Lancet Infectious Diseases described a new malaria strain that is resistant to an artemisinin combination therapy and is spreading across the Greater Mekong Subregion in Southeast Asia, but experts from the World Health Organization and some malaria experts have dismissed the report as nothing new. Study co-author Arjen Dondorp worries that the conflicting statements and arguing between groups could lower the sense of urgency and confuse participating countries.
Science online (10/11) 
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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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