CER Daily Newsfeed

Video: Comparative Effectiveness in NMOSD: Relapse Risk, Safety Signals, and Why Treatment Choice Matters

(3/5, Shamik Bhattacharyya, MD, Philippe-Antoine Bilodeau, MD, Neurology Live) “In this episode, the panel reviews the real-world efficacy and safety data from their 176-patient cohort, highlighting relapse risk across therapies, the cumulative safety burden of rituximab, and why mycophenolate mofetil and azathioprine may no longer have a role in NMOSD management.” View Video

Patient Health Data as a Public Utility: A Former ARPA-H Data Chief Explains

(3/5, Katie Palmer, STAT+) reports “...Natural resources can be easily exploited. So any real-world data governance system would need to be carefully constructed to foster patients’ trust. If health data were treated more like the valuable commodity it is, they argue, the individuals included should have the ability to understand what’s being done with the it and to mediate access to their data. The push for a public utility model for health data is about transparency, said co-author Alastair Thomson, who resigned as chief data officer of ARPA-H in August...STAT spoke with Thomson about how the current health data economy would have to change for it to become a public utility.” Subscription Required

New Resource Provides Insights on PCORnet® Clinical Research Network Site Capabilities

(3/5, PCORnet Blog) comments “A new resource that provides a snapshot of site capabilities for national-scale patient-centered research is now available. The PCORnet® Clinical Research Network Site Profiles can help researchers understand site capacity and resources including: Population characteristics, such as types of patients, care settings, and location data; Current PCORnet® Study participation; Patient recruitment methods and institutional procedures; Data linkages.” Full

UK-US Drug Deal: Ministers Given Power to Control NICE Approvals Despite Warnings

(3/5, Jacqui Wise, BMJ) reports “...Proposals to allow ministers to change the cost effectiveness threshold used by the National Institute for Health and Care Excellence (NICE) in deciding whether to approve new drugs for the NHS have been rubber stamped by the government. This is despite concerns raised in a public consultation that the move would threaten NICE’s independence.” Full