National Institutes of Health: NIH-supported research survey to examine impact of COVID-19 on rare diseases community

National Institutes of Health: NIH-supported research survey to examine impact of COVID-19 on rare diseases community. “For the millions of people living with a rare disease, the novel coronavirus disease COVID-19 presents challenges, from potential reduced access to needed medical care to possible heightened anxiety and stress. A new online survey launched by the National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) aims to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families and their caregivers. Results will help the rare disease research community shed light on the needs of people with rare diseases during the COVID-19 pandemic and other potential health crises, in addition to informing future research efforts.”

National Institutes of Health: Expert U.S. panel develops NIH treatment guidelines for COVID-19

National Institutes of Health: Expert U.S. panel develops NIH treatment guidelines for COVID-19. “A panel of U.S. physicians, statisticians, and other experts has developed treatment guidelines for coronavirus disease 2019 (COVID-19). These guidelines, intended for healthcare providers, are based on published and preliminary data and the clinical expertise of the panelists, many of whom are frontline clinicians caring for patients during the rapidly evolving pandemic.”

National Institutes of Health: Antiviral remdesivir prevents disease progression in monkeys with COVID-19

National Institutes of Health: Antiviral remdesivir prevents disease progression in monkeys with COVID-19. “Early treatment with the experimental antiviral drug remdesivir significantly reduced clinical disease and damage to the lungs of rhesus macaques infected with SARS-CoV-2, the coronavirus that causes COVID-19, according to National Institutes of Health scientists.”

National Institutes of Health: The National Library of Medicine expands access to coronavirus literature through PubMed Central

National Institutes of Health: The National Library of Medicine expands access to coronavirus literature through PubMed Central. “Following on a statement issued by the White House Office of Science and Technology Policy (OSTP) and science policy leaders from almost a dozen other nations, [National Library of Medicine] has stepped up its collaboration with publishers and scholarly societies to increase the number of coronavirus-related journal articles in PMC, along with available data supporting them. Submitted publications will be made available in PMC as quickly as possible after publication, in formats and with needed permissions to support text mining.”

Science: FDA and NIH let clinical trial sponsors keep results secret and break the law

Science: FDA and NIH let clinical trial sponsors keep results secret and break the law. “Science examined more than 4700 trials whose results should have been posted on the NIH website ClinicalTrials.gov under the 2017 rule. Reporting rates by most large pharmaceutical companies and some universities have improved sharply, but performance by many other trial sponsors—including, ironically, NIH itself—was lackluster. Those sponsors, typically either the institution conducting a trial or its funder, must deposit results and other data within 1 year of completing a trial. But of 184 sponsor organizations with at least five trials due as of 25 September 2019, 30 companies, universities, or medical centers never met a single deadline.”

Everyone’s Voice Matters: Making Science Open and Accessible to the Public (NLM Musings from the Mezzanine)

NLM Musings from the Mezzanine: Everyone’s Voice Matters: Making Science Open and Accessible to the Public. “Last month, the National Institutes of Health (NIH) released its Draft NIH Policy for Data Management and Sharing and Supplemental Draft Guidance (Draft NIH Policy), making it available for public comment. Comments are due by January 10, 2020. Because everyone’s voice matters, I’m calling on the Musings audience to review the draft and offer your perspectives on this policy now!”

MobiHealthNews: FDA, NIH’s newest app asks clinicians to log case data when treating difficult infections

MobiHealthNews: FDA, NIH’s newest app asks clinicians to log case data when treating difficult infections. “The FDA and National Institutes of Health are tapping the clinical community and a newly launched mobile platform in its search for novel infectious disease interventions. Called CURE ID, the online data repository will allow clinicians to report instances in which existing FDA-approved drugs are used to successfully treat infections.”