National Institutes of Health: All of Us Research Program launches COVID-19 research initiatives

National Institutes of Health: All of Us Research Program launches COVID-19 research initiatives. “The All of Us Research Program, part of the National Institutes of Health, today announced that it is leveraging its significant and diverse participant base to seek new insights into COVID-19—through antibody testing, a survey on the pandemic’s impacts and collection of electronic health record information.”

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.”

Health IT Analytics: NIH, FDA Launch Database for Parkinson’s Disease Precision Medicine

Health IT Analytics: NIH, FDA Launch Database for Parkinson’s Disease Precision Medicine. “The Accelerating Medicines Partnership (AMP) program for Parkinson’s disease (PD) has launched a data portal to help researchers develop precision medicine therapies for the condition. The portal includes de-identified data collected from 4,298 patients with Parkinson’s and will enable researchers to study complex data sets and perform genome-wide analyses.”

CNET: Google ditched project to release 100,000 X-ray images, amid privacy concerns

CNET: Google ditched project to release 100,000 X-ray images, amid privacy concerns. “Google was getting ready to publicly release more than 100,000 human X-ray images through a partnership with the US National Institutes of Health, before abandoning the plan last minute after the government agency raised privacy concerns, says a Friday report by The Washington Post.”

National Institutes of Health: Five Petabytes of Sequence Read Archive Data Now in the Cloud

National Institutes of Health: Five Petabytes of Sequence Read Archive Data Now in the Cloud. “The National Center for Biomedical Information (NCBI) at the National Library of Medicine (NLM) recently moved the five petabytes of public SRA data to the cloud with support from the National Institutes of Health (NIH) Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability (STRIDES) Initiative. These data include a variety of genomes, gene expression data, and more.”

NIH: The “PROMIS” of Computer-Based Medical Records

NIH: The “PROMIS” of Computer-Based Medical Records. “The National Library of Medicine recently acquired the Patient/Problem Oriented Medical Record System Archives, a collection of materials related to the development of an early computer system for organizing patient data and diagnostic decision-making. Jan Schultz generously contributed archival materials from his work with Dr. Larry Weed at the PROMIS lab at the University of Vermont. NLM archivist John Rees asked Jan Schultz about his perspective on the early history of electronic medical records.”

Center for the History of Medicine: Preliminary Opening of the Vernacular Archive of Normal Volunteers, 1940-2018

Center for the History of Medicine: Preliminary Opening of the Vernacular Archive of Normal Volunteers, 1940-2018. “The Center for the History of Medicine is pleased to announce that the first portion of the Vernacular Archive of Normal Volunteers (VANV), 1940-2018 is now open to research. VANV is a collection of oral histories, associated archival documents, and project records created and collected by Laura Jeanine Morris Stark to explore the lives of the first ‘normal control’ research subjects at the Clinical Center of the United States National Institutes of Health (NIH) in Bethesda, Maryland who were recruited through NIH’s Normal Volunteer Patient Program. ” I didn’t have a good handle on what a “normal volunteer” is — the medical section of the Free Dictionary helped me out.

UPI: NIH, Department of Defense to develop limb loss database

UPI: NIH, Department of Defense to develop limb loss database. “The U.S. government is working to develop a database that will include the number of people in the United States living with limb losses for insight on their challenges and needs. The National Institutes of Health and the Department of Defense expect to have the Limb Loss and Preservation Registry operational in 2020, the NIH announced on Monday.”

NIH: NIH makes STRIDES to accelerate discoveries in the cloud

NIH: NIH makes STRIDES to accelerate discoveries in the cloud. “The National Institutes of Health has launched a new initiative to harness the power of commercial cloud computing and provide NIH biomedical researchers access to the most advanced, cost-effective computational infrastructure, tools and services available. The STRIDES (Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability) Initiative launches with Google Cloud as its first industry partner and aims to reduce economic and technological barriers to accessing and computing on large biomedical data sets to accelerate biomedical advances.”