PHE - Resources

"Today, the White House Office of Science and Technology Policy (OSTP) updated U.S. policy guidance to make the results of taxpayer-supported research immediately available to the American public at no cost. In a memorandum to federal departments and agencies, Dr. Alondra Nelson, the head of OSTP, delivered guidance for agencies to update their public access policies as soon as possible to make publications and research funded by taxpayers publicly accessible, without an embargo or cost. All agencies will fully implement updated policies, including ending the optional 12-month embargo, no later than December 31, 2025."

"Abstract This study examined the adherence to and the potential benefit of Kundalini yoga (KY) for post-treatment Lyme disease syndrome (PTLDS). Participants were randomly assigned to 8 weeks of a KY small-group intervention or a waitlist control (WLC). Adherence was measured as attendance at KY group sessions. Primary outcomes assessed pain, pain interference, fatigue, and global health. Secondary outcomes assessed multisystem symptom burden, mood, sleep, physical and social functioning, cognition, and mindfulness. Linear mixed models were used to test changes in outcomes over time as a function of group assignment; intercepts for participants were modeled as random effects. Although the target sample size was 40 participants, the study concluded with 29 participants due to recruitment challenges. No KY participants dropped out of the study, and participants attended 75% of group sessions on average, but WLC retention was poor (57%). Regarding primary outcomes, there was no significant interaction between group and time. Regarding secondary outcomes, there was a significant interaction between group and time for multisystem symptom burden (p < 0.05) and cognition (p < 0.01); KY participants reported improved multisystem symptom burden and cognition over the course of the study compared to WLC participants. To enhance recruitment and retention, future trials may consider expanding geographic access and including supportive procedures for WLC participants. This preliminary study supports the need for a larger study to determine if KY reduces multisystem symptom burden and enhances cognition among people with PTLDS."

"No matter what our illness - and we are all ill at some point or another - from the common cold to COVID, to the illness that will end our life, there are seeds of personal evolution and the potential to initiate ourselves into a new way of being after our illness is over. "

"Why are some people more resilient than others-and can it be taught? By Lorna Collier November 2016, Vol 47, No. 10 Print version: page 48"

"The simplest thing you can do to start your day happier by focusing on the positive and becoming more mindful. The Five Minute Journal's guided and structured exercises will lead you down a path toward an enhanced version of the person you already are. "

"iHopeTM Genetic Health (iGH) will eliminate the barriers to genomic insights for tens of thousands of individuals across the globe each year by addressing access to high-quality clinical whole genome sequencing (cWGS) as well as education and support. Leveraging contributions of genomic sequencing technology from Illumina and donations from philanthropists and technology and logistics partners, iGH will provide awards of reagents and, where necessary, sequencers and software to enable genomic testing across the globe. iGH will provide cWGS and patient support services for undiagnosed individuals in low and middle income countries1 (LMICs) and low-to-moderate income2 (LMI) households across the globe and in the United States (US) respectively. Over time iGH will develop in-country, sustainable solutions for communities with little to no access to genomic care."

"Multiple Chronic Conditions Community: People who live with multiple complex, chronic, persistent, painful and often mystifying health conditions are not only resilient but wise due to the expertise gained from managing MCCs and navigating healthcare systems. Comparative Effectiveness Research (CER) can benefit from their expertise. People who help patients manage their health whether as professional care providers, insurance providers, policy makers, researchers, family or friends who care each day about these patients are also considered members of the MCC community. Building a diverse multi-stakeholder team to design CER studies to improve health outcomes for MCC patients requires a thoughtful and person centered approach to building a research community. "

VLA15 is currently the only active vaccine program in clinical development against Lyme disease. VLA15 is a multivalent recombinant protein vaccine that targets six serotypes of Borrelia representing the most common pathogenic strains found in the United States and Europe. Valneva has completed recruitment and reported initial results for two Phase 2 clinical trials [5,6] of VLA15 in over 800 healthy adults and in which Valneva observed high levels of antibodies against all six serotypes. Valneva announced a collaboration with Pfizer for late phase development and, if approved, commercialization of VLA15 [7]. As part of its collaboration with Pfizer, Valneva accelerated the pediatric development of VLA15 with an additional Phase 2 clinical trial initiated in March 2021. In July 2021, Pfizer and Valneva announced recruitment completion for VLA15-221 with a total of 625 participants, 5 to 65 years of age [8]. The VLA15 program was granted Fast Track designation by the U.S. Food and Drug Administration (FDA) in July 2017 [9].

"Autoimmune diseases are complex. Advancing treatments doesn't have to be. From your very first symptom to your eventual diagnosis and treatment, your unique autoimmune journey has accumulated valuable data that tells a story that could lead to better treatments. Unfortunately, this story is trapped in various health systems and sits there, unused. As the patient, you have the power to unlock this data. With your permission, DrugViu will find and consolidate all your medical records and return them back to you on your own secure portal, for free. There, you'll have a holistic view of your entire health history, while also having the power to share your records with current and future medical providers. You'll also have the option of contributing your de-identified and anonymized data to scientists and doctors working to find better treatments and improve the diagnosing process. Together, we will power tomorrow's cures."

"What is a Transformational Community? A collection of individuals who share an intention to support each other's growth, development, health, and wholeness."

"Now more than ever, the global mental health community must look to innovative solutions to curtail the 'second epidemic' of mental ill-health sweeping the world. The huge variety of solutions has created a new problem - how can one ensure the disruptive tech they are using is clinically validated, ethical and efficacious? The Forum has partnered with Deloitte to create a set of standards to vet digital mental health solutions called the Global Governance Toolkit for Digital Mental Health."

"Thesis: "Patient Empowerment through Timely Information" On Friday, 1 October 2021, Thomas Timmers (CEO) successfully defended his doctoral PhD "Patient Empowerment through Timely Information" at Radboudumc.   He examines the impact of the provision of timely information using an app to increase patients' self-management throughout their treatment. The thesis includes a systematic review and the results of 2 large multi-center RCT's. Furthermore, a qualitative study was performed to determine what kind of timely education patients need."

"As a repository of sensitive patient information, the company's databases churn silently behind the scenes of their medical care, scooping up their most guarded secrets: the diseases they have, the drugs they're taking, the places their bodies are broken that they haven't told anyone but their doctor. The family of databases that make up MarketScan now include the records of a stunning 270 million Americans, or 82% of the population. The vast reach of MarketScan, and its immense value, is unmistakable. Last month, a private equity firm announced that it would pay $1 billion to buy the databases from IBM. It was by far the most valuable asset left for IBM as the technology behemoth cast off its foundering Watson Health business."

"Yale University researchers have developed a novel vaccine that in guinea pigs offers protection against infection by the bacterium that causes Lyme disease and may also combat other tick-borne diseases. Instead of triggering an immune response against a particular pathogen, the new vaccine prompts a quick response in the skin to components of tick saliva, limiting the amount of time that ticks have to feed upon and infect the host, the study shows. The vaccine is delivered by the same mRNA technology that has proved so effective against COVID-19."

"Despite their capacity to acquire and pass on an array of debilitating pathogens, research on ticks has lagged behind other arthropod vectors, such as mosquitoes, largely because of challenges in applying available genetic and molecular tools. CRISPR-Cas9 is transforming non-model organism research; however, successful gene editing has not yet been reported in ticks. Technical challenges for injecting tick embryos to attempt gene editing have further slowed research progress. Currently, no embryo injection protocol exists for any chelicerate species, including ticks. Herein, we report a successful embryo injection protocol for the black-legged tick, Ixodes scapularis, and the use of this protocol for genome editing with CRISPR-Cas9. We also demonstrate that the ReMOT Control technique could be successfully used to generate genome mutations outside Insecta. Our results provide innovative tools to the tick research community that are essential for advancing our understanding of the molecular mechanisms governing pathogen transmission by tick vectors and the underlying biology of host-vector-pathogen interactions."

"We've built a learning experience from the ground to develop these essential skills. There's something for everyone: expert videos, engaging activities, the Mood Meter tool, personal reflections, and much more."

"Get inspiration and ideas from hundreds of self-tracking projects documented in our community archive, searchable by tools and topics."

"Thank you for considering buying our book, Personal Science: Learning to Observe. The book presents a step-by-step approach to exploring your personal questions with empirical methods. It contains no advice whatsoever on what treatments or medicines or diets or vitamins or exercises are worth trying. Instead, it offers meta-advice; that is, advice on how to know if the things that you try actually work the way you expect, and advice about how to develop reasonable new ideas of things to try."