Contents contributed and discussions participated by Dennis OConnor
Valneva and Pfizer to take Lyme disease vaccine into Phase 3 trial this year - 0 views
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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].
DrugViu | Advancing Autoimmune Diseases Research - 0 views
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"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."
The Purposeful Connection App - 0 views
Digital mental health is here, but who is ensuring quality? | World Economic Forum - 0 views
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"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."
Patient Journey App: improve healthcare & patient engagement | Patient Journey App - 0 views
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"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."
How a decades-old database became a hugely profitable dossier on the health of 270 mill... - 0 views
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"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."
A Texas team comes up with a COVID vaccine that could be a global game changer | Nevada... - 0 views
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"A vaccine authorized in December for use in India may help solve one of the most vexing problems in global public health: How to supply lower-income countries with a COVID-19 vaccine that is safe, effective and affordable. The vaccine is called CORBEVAX. It uses old but proven vaccine technology and can be manufactured far more easily than most, if not all, of the COVID-19 vaccines in use today."
The Power of Advocating Through Music | Rachelle Babler | TEDxWestMonroe - 0 views
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"Rachelle Babler explores the untapped powers of combining music and advocacy to create human impact. She did this after losing her sister to colon cancer to create awareness around prevention and screening. The response was overwhelming. While many have advocated through speeches, fundraisers and media, very few advocate through songwriting and music. Maybe music will be the critical voice that creates the awakening to help us unite, during times of chaos and separation. When we are divided by speech, we can be united and reunited through the power of song. Rachelle Babler grew up in Southern California near the sunny beaches of San Diego and has always been an avid explorer, traveler, musician and creative soul. At the height of her career in forensics, she quit her job cold turkey to pursue her "why" and found out what that was during a global pandemic, "TO empower others to consciously advocate, SO THAT they can heal, inspire and unite the human collective". She is a #1 International Best Selling Co-Author, Speaker, Advocate. Singer/Songwriter and proud mother to her two amazing children, Austin and Camryn. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx"
Resources - NORD (National Organization for Rare Disorders) - 0 views
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The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub that is designed to be used in building novel tools to accelerate drug development across rare diseases. It is being developed by the Critical Path Institute (C-Path) and NORD through a collaborative grant from the FDA [Critical Path Public-Private Partnerships Grant Number U18 FD005320 from the US Food and Drug Administration].
Patient Focused Drug Development - How RDCA-DAP Can Help - YouTube - 0 views
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"Patient-Focused Drug Development (PFDD) is a process that provides patients and caregivers impacted by a rare disease the opportunity to share their experience with those directly involved in the drug development process. The Rare Disease Cures Accelerator, a Data Analysis Platform (RDCA-DAP®), a collaboration between the National Organization for Rare Disorders (NORD®), Critical Path Institute (C-Path), and the US Food and Drug Administration (FDA), can strengthen PFDD efforts to support life-saving and life-changing outcomes. This webinar is intended for patients, caregivers, advocates, students, and those who are interested in learning more about PFDD as well as efforts to accelerate research and drug development in rare diseases, such as the RDCA-DAP. For more information on RDCA-DAP, visit: www.rarediseases.org/rdca-dap. SHOW LESS "
Consortium Last Month Seeks Context For Undiagnosed Patients - 0 views
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September 20, 2016 | About a year ago, Boston Children’s Hospital launched its second CLARITY challenge. CLARITY Undiagnosed focused on six patient families searching for a diagnosis. Alongside the challenge, a documentary is being filmed, driven by Katia Moritz, a Florida psychologist who is dealing with her own undiagnosed disease. And last month another piece of the puzzle fell into place: the UnDx Consortium met in San Diego to try to put context around these diseases.
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Doug Jamison, co-organizer of the UnDx Consortium
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"September 20, 2016 | About a year ago, Boston Children's Hospital launched its second CLARITY challenge. CLARITY Undiagnosed focused on six patient families searching for a diagnosis. Alongside the challenge, a documentary is being filmed, driven by Katia Moritz, a Florida psychologist who is dealing with her own undiagnosed disease. And last month another piece of the puzzle fell into place: the UnDx Consortium met in San Diego to try to put context around these diseases."
SPACES, a first of its kind song created by the SMA community - 0 views
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"SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program - song, music video and album art - was led by someone with SMA. It uses the universal language of music to elevate the many voices of this community and celebrate our individuality. We're excited to share this with the world."
Poetry of Resilience: From Haiku to Free Verse | San Diego Public Library - 0 views
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Registration for this event will close on December 11, 2021 @ 4:00pm. There are 8 seats remaining. Event Details This is an in-person event at the San Diego Central Library. Masks are required for unvaccinated patrons and social distancing protocol will be followed. During World War II, heroic San Diego librarian Clara Breed exchanged hundreds of letters with young Japanese Americans in concentration camps, serving as a reminder of the possibility for decency and justice in a troubled world. Join 14 of San Diego's best poets including the City's inaugural Poet Laureate, Ron Salisbury, for an afternoon of restorative poetry. Poets will read and perform poems written specifically for this current historical moment of deep national reflection and a deadly pandemic which has locked down our lives and created isolation and fear.
RARE-X A Patient Centric Approach to Consent.docx.pdf - 0 views
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RARE‐X is committed to transforming rare disease by ensuring that patient communities, clinicians, researchers, and drug developers have access to the right data at the right time. At the heart of RARE‐X's approach is a belief that patients should own their data. In July 2021, RARE‐X launched itsfirst set of rare disease pilot programs on its data collection platform supported by data governance and consent that will ensure participants who spend the time to enter their data are able to share it with those stakeholders they choose.
It's time for individuals to own their health data - STAT - 0 views
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Recommended by Tyler Orion - "For data from wearable technology to apps to text messaging, ownership is determined by the terms and conditions you agree to. The Apple Watch and Google Fitbit, for example, are both designed to give you access to key indicators of your health but their terms and conditions don't give you ownership of your data - and users don't know how their data are being used. This landscape is further complicated by the status of data under property law, which isn't viewed as wholly "ownable." And since current laws don't view people as the owners of their personal data, health care and service providers treat data as under their ownership. And those data are lucrative."
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