PHE - Resources

"BOSTON-Having exhausted the possibilities of the chromosome pairs that came preloaded on the original human genome, researchers at Harvard Medical School's Department of Genetics told reporters Wednesday they had unlocked 47 new editable genes following their purchase of a CRISPR expansion pack. "This add-on has a ton of incredible new genes, and we can't wait to start inserting them into our lab specimens," said Kevin Spiros, a professor of genetics, remarking that there was nothing more fun than having "some fresh strands of recombinant DNA to play around with." "

"I propose that beyond investor lack of awareness, hesitancy and risk aversiveness, blockchain-based solutions introduce an existential threat to the business of healthcare and therefore detract investment. Blockchain does not just dis-intermediate heavily-invested and powerful third parties in healthcare, like pharmacy benefit managers, group purchasing organizations, and third party administrators; blockchain changes the economic power balance that drives the current status quo, which represents nearly 20% of the US GDP."

Latest from Alex Cahana on the health ecosystem we are intent on distrupting.

Full Text PDF available: "Wearable device signals and home blood pressure data across age, sex, race, ethnicity, and clinical phenotypes in the Michigan Predictive Activity & Clinical Trajectories in Health (MIPACT) study: a prospective, community-based observational study"

"Researchers hope that building out sequencing data from more people in tandem with reviewing their clinical information can help steer them to more connections between genetic variants and disease. And with new technology, scientists are getting better at whittling down all the genetic noise produced by looking at someone's whole genome to home in on what's causing these conditions."

"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"

"Most people who strap a fitness tracker to their wrist do so for motivation toward a daily step goal, or perhaps to prove their suspicions about a bad night's sleep. They don't necessarily think about ways it can help their employers help them."

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 (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 "

"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."

James Ian's new song called "Spaces" is made by, and for, the disabled community. While the song highlights a disease known as spinal muscular atrophy, or SMA, it also celebrates the talent of the much broader disability community.

"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."

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.

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."

Recommended by Tyler Orion- "As the future of our healthcare system moves towards electronic healthcare records, we need patient data ownership rights to protect patient care. 4 Principles 1. Patients co-own or fully own every health data point about themselves. 2. Health data generated about the patient by a provider is co-owned by both parties. 3. Health data generated by the patient is fully owned by the patient with a right to possess, share, sell, or destroy. 4. All uses of a patients' health data shall be consented in advance by the patient, other than uses required by law."

"Digital Twins and the Emerging Science of Self: Implications for Digital Health Experience Design and "Small" Data"

"Trick out your toolbox A growing library of software tools and services allows digital health companies to build their own unique experiences and iterate with ease."

""Biogen should have had a plan in place from the very start about how it would handle expanded access requests that came in at all different points: before, during and after trial enrollment," Holly Fernandez-Lynch, an assistant professor of medical ethics at the Perelman School of Medicine at the University of Pennsylvania, explained."

"Ultrasound Technique Targeted at Neurons in Bid To Treat Chronic Pain"

See your brain activity visualized in Mendi's training game. You control the game using only your brain, making brain training tangible and visible. "Make the ball rise and earn points. These are both signs you're increasing your brain activity and strengthening your neural pathways. The goal? Better brain performance and mental wellbeing."