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Dennis OConnor

The Holistic Patient Journey_HealthVerity-Evidation Webinar.mp4 - 0 views

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    DeAunne Denmark, MD. Phd "This is a good recent webinar with some details about how their platform works on both patient and enterprise sides, and frames why "context" is so important, and how it can be analyzed as a part of imperfect, complex real-world datasets. Drives home that the types of analytics needed for this are actually not new - used extensively already on consumers for marketing, sales, etc. and have been for awhile. Also good segment about patient consent and data rights - values, integrity, respect."
Dennis OConnor

About | Stats-of-1 - 1 views

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    ERIC J. DAZA Digital WISDOM: Esametry An n-of-1, single-case, or single-subject study is an idiographic, within-individual study of one person's recurrent characteristics and patterns under various exposure or treatment conditions. These exposure periods make up repeating intervals that can be accurately described as a set of partitioned time series of variables (e.g., outcomes and predictors). The core idea is that there are stable periodic or cyclic patterns that are predictable.
Dennis OConnor

Development and validation of the Collaborative Health Outco... : PAIN Reports - 0 views

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    Open Access. Abstract Introduction: Critical for the diagnosis and treatment of chronic pain is the anatomical distribution of pain. Several body maps allow patients to indicate pain areas on paper; however, each has its limitations. Objectives: To provide a comprehensive body map that can be universally applied across pain conditions, we developed the electronic Collaborative Health Outcomes Information Registry (CHOIR) self-report body map by performing an environmental scan and assessing existing body maps. Methods: After initial validation using a Delphi technique, we compared (1) pain location questionnaire responses of 530 participants with chronic pain with (2) their pain endorsements on the CHOIR body map (CBM) graphic. A subset of participants (n = 278) repeated the survey 1 week later to assess test-retest reliability. Finally, we interviewed a patient cohort from a tertiary pain management clinic (n = 28) to identify reasons for endorsement discordan
Dennis OConnor

Frontiers | Using Self-Study and Peer-to-Peer Support to Change "Sick" Care to "Health" Care: The Patient Perspective | Digital Health - 1 views

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    "Camille Nebeker, Bethany Weisberg, Eric Hekler, and Michael Kurisu Frontiers in Digital Health - This paper is also posted on our PHE Website
Dennis OConnor

Which Covid-19 Data Can You Trust? - 0 views

  • incomplete or incorrect data can also muddy the waters, obscuring important nuances within communities, ignoring important factors such as socioeconomic realities, and creating false senses of panic or safety, not to mention other harms such as needlessly exposing private information.
  • Right now, bad data could produce serious missteps with consequences for millions.
  • Whether you’re a CEO, a consultant, a policymaker, or just someone who is trying to make sense of what’s going on, it’s essential to be able to sort the good data from the misleading — or even misguided.
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  • common red flags
  • Data products that are too broad, too specific, or lack context.
  • Public health practitioners and data privacy experts rely on proportionality
  • only use the data that you absolutely need for the intended purpose and no more.
  • Even data at an appropriate spatial resolution must be interpreted with caution — context is key.
  • Simply presenting them, or interpreting them without a proper contextual understanding, could inadvertently lead to imposing or relaxing restrictions on lives and livelihoods, based on incomplete information.
  • The technologies behind the data are unvetted or have limited utility.
  • Both producers and consumers of outputs from these apps must understand where these can fall short.
  • In the absence of a tightly coupled testing and treatment plan, however, these apps risk either providing false reassurance to communities where infectious but asymptomatic individuals can continue to spread disease, or requiring an unreasonably large number of people to quarantine.
  • Some contact-tracing apps follow black-box algorithms, which preclude the global community of scientists from refining them or adopting them elsewhere.
  • These non-transparent, un-validated interventions — which are now being rolled out (or rolled back) in countries such as China, India, Israel and Vietnam — are in direct contravention to the open cross-border collaboration that scientists have adopted to address the Covid-19 pandemic.
  • Models are produced and presented without appropriate expertise.
  • Epidemiological models that can help predict the burden and pattern of spread of Covid-19 rely on a number of parameters that are, as yet, wildly uncertain.
  • n the absence of reliable virological testing data, we cannot fit models accurately, or know confidently what the future of this epidemic will look like
  • and yet numbers are being presented to governments and the public with the appearance of certainty
  • Read Carefully and Trust Cautiously
  • Transparency: Look for how the data, technology, or recommendations are presented.
  • Thoughtfulness: Look for signs of hubris.
  • Example: Telenor
  • Expertise: Look for the professionals. Examine the credentials of those providing and processing the data.
  • Open Platforms: Look for the collaborators.
  • technology companies like Camber Systems, Cubeiq and Facebook have allowed scientists to examine their data,
  • The Covid-19 Mobility Data Network, of which we are part, comprises a voluntary collaboration of epidemiologists from around the world analyzes aggregated data from technology companies to provide daily insights to city and state officials from California to Dhaka, Bangladesh
  • This pandemic has been studied more intensely in a shorter amount of time than any other human event.
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    "This pandemic has been studied more intensely in a shorter amount of time than any other human event. Our globalized world has rapidly generated and shared a vast amount of information about it. It is inevitable that there will be bad as well as good data in that mix. These massive, decentralized, and crowd-sourced data can reliably be converted to life-saving knowledge if tempered by expertise, transparency, rigor, and collaboration. When making your own decisions, read closely, trust carefully, and when in doubt, look to the experts."
Dennis OConnor

The proximal origin of SARS-CoV-2 | Nature Medicine - 1 views

  • Here we review what can be deduced about the origin of SARS-CoV-2 from comparative analysis of genomic data
  • Our analyses clearly show that SARS-CoV-2 is not a laboratory construct or a purposefully manipulated virus.
  • The receptor-binding domain (RBD) in the spike protein is the most variable part of the coronavirus genome1,2. Six RBD amino acids have been shown to be critical for binding to ACE2 receptors and for determining the host range of SARS-CoV-like viruses7.
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  • Theories of SARS-CoV-2 originsIt is improbable that SARS-CoV-2 emerged through laboratory manipulation of a related SARS-CoV-like coronavirus.
  • the genetic data irrefutably show that SARS-CoV-2 is not derived from any previously used virus backbone
  • we propose two scenarios that can plausibly explain the origin of SARS-CoV-2: (i) natural selection in an animal host before zoonotic transfer; and (ii) natural selection in humans following zoonotic transfer.
  • COVID-19 were linked to the Huanan market in Wuhan
  • it is likely that bats serve as reservoir hosts for its progenitor
  • Malayan pangolins (Manis javanica) illegally imported into Guangdong province contain coronaviruses similar to SARS-CoV-221
  • Although no animal coronavirus has been identified that is sufficiently similar to have served as the direct progenitor of SARS-CoV-2, the diversity of coronaviruses in bats and other species is massively undersampled
  • For a precursor virus to acquire both the polybasic cleavage site and mutations in the spike protein suitable for binding to human ACE2, an animal host would probably have to have a high population density (to allow natural selection to proceed efficiently) and an ACE2-encoding gene that is similar to the human ortholog
  • It is possible that a progenitor of SARS-CoV-2 jumped into humans, acquiring the genomic features described above through adaptation during undetected human-to-human transmission.
  • All SARS-CoV-2 genomes sequenced so
  • are thus derived from a common ancestor that had them too
  • Estimates of the timing of the most recent common ancestor of SARS-CoV-2 made with current sequence data point to emergence of the virus in late November 2019 to early December 201923,
  • compatible with the earliest retrospectively confirmed cases
  • Basic research involving passage of bat SARS-CoV-like coronaviruses in cell culture and/or animal models has been ongoing for many years in biosafety level 2 laboratories across the world27, and there are documented instances of laboratory escapes of SARS-CoV28. We must therefore examine the possibility of an inadvertent laboratory release of SARS-CoV-2.
  • The finding of SARS-CoV-like coronaviruses from pangolins with nearly identical RBDs, however, provides a much stronger and more parsimonious explanation of how SARS-CoV-2 acquired these via recombination or mutation1
  • it is reasonable to wonder why the origins of the pandemic matter
  • Detailed understanding of how an animal virus jumped species boundaries to infect humans so productively will help in the prevention of future zoonotic events.
  • More scientific data could swing the balance of evidence to favor one hypothesis over another.
Dennis OConnor

Projects / Blog | Eric J. Daza, DrPH, MPS - 0 views

  • Causes and Associations in Single-Individual Analysis (CASIA) [pronounced: ka-sha] | Project
  • The Situation: You have a lot of data from your wearable or implantable device, sensor, or mobile app. You have a recurring outcome you’d like to change (e.g., weight, irritable bowel syndrome, migraine headaches, asthma attacks, chronic pain, blood glucose levels). You’ve identified possible triggers, but their effects may take some time to appear---and it may be expensive or painful to test all or even just a few of them.
  • The Challenge: Design experiments to conduct on yourself to characterize the effects of only the most likely triggers.
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  • Creating Evidence from Real World Patient Digital Data | Project
Dennis OConnor

Coronavirus: Digital Health Projects and Resources | Stats-of-1 - 0 views

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    Recommended by Dr. Michael Kurisu D.O.: ...the owner of the blog is Eric Daza DrPH. He is a biostatitician that does modeling on causal beliefs for Nof1 studies for individuals.
Dennis OConnor

Stop, collaborate and listen - Crowdsourcing to fight covid-19 | International | The Economist - 0 views

  • , the World Health Organisation (WHO) is crowdsourcing what hospitals are learning.
  • submit anonymised covid-19 patient records to its global database
  • isting the drugs prescribed, procedures carried out and outcomes.
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  • Clinicians who treat covid-19 patients in 30 countries chime in at a twice-weekly virtual gathering run by the WHO.
  • Their input, plus the clinical studies that are being published at a steady clip, are distilled into the WHO’s standards of care.
  • these standards have been revised five times in less than two months.
  • On March 12th eight Chinese doctors, led by Liang Zongang, a professor of cardiopulmonary reanimation, arrived in Italy on a charter flight that brought medical equipment supplied by the Chinese Red Cross.
  • ollowed on March 18th by around 300 Chinese intensive-care doctors.
  • Online learning about covid-19 is gathering speed, especially in developing countries.
  • To save the lives of gravely ill patients, doctors are trying many drugs
Dennis OConnor

What Went Wrong with Coronavirus Testing in the U.S. | The New Yorker - 0 views

  • n February 5th, sixteen days after a Seattle resident who had visited relatives in Wuhan, China, was diagnosed as having the first confirmed case of COVID-19 in the United States, the Centers for Disease Control, in Atlanta, began sending diagnostic tests to a network of about a hundred state, city, and county public-health laboratories⁠. Up to that point, all testing for COVID-19 in the U.S. had been done at the C.D.C.; of some five hundred suspected cases⁠ tested at the Centers, twelve had confirmed positive. The new test kits would allow about fifty thousand patients to be tested, and they would also make testing much faster, as patient specimens would no longer have to be sent to Atlanta to be evaluated.
  • Before a state or local lab could use the C.D.C.-developed tests on actual patients
  • verification
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  • larger number, about thirty-six of them, received inconclusive⁠ results from one of the reagents.
  • Another five,
  • had problems with two reagents
  • On February 8th
  • e cascading effects that they’ve had on the country’s COVID-19 preparations suggest a much larger problem with the way the United States has structured its pandemic response.
  • the verification problems were “part of the normal procedures⁠.” In the meantime, she said, until new reagents could be manufactured, all COVID-19 testing in the United States would continue to take place exclusively at the C.D.C⁠.
  • The public-health-laboratory network was never intended to provide widespread testing in the event of a pandemic.
  • the three-week delay caused by the C.D.C.’s failure to get working test kits into the hands of the public-health labs came at a crucial time.
  • The void created by the C.D.C.’s faulty tests made it impossible for public-health authorities to get an accurate picture of how far and how fast the disease was spreadin
  • In hotspots like Seattle, and probably elsewhere, COVID-19 spread undetected for several weeks, which in turn only multiplied the need for more tests.
  • The problem was that containment was not done very well.
  • we’re looking at exponential growth, and we need to figure out how to meet an exponential demand.”
  • Yet flexibility was not what Jerome and his lab found when they tried to get an E.U.A. for their COVID-19 test.
  • problem was exacerbated by a President who has simultaneously underplayed the severity of the outbreak and overpromised the means available to fight it
  • problems with COVID-19 testing in the United States have obscured
  • several labs reported their problems to the C.D.C. In a briefing a few days later,
  • Chinese scientists uploaded a copy of the virus’s genome to an online repository⁠, and virologists around the world set to work to develop diagnostic tests for the new disease
  • January 21st, a team in Berlin, led by Christian Drosten, one of the scientists who discovered the original SARS virus, in 2003, submitted the first paper to describe a protocol for testing for SARS-CoV-2.
  • That protocol would form the basis for a test disseminated, early on, by the World Health Organization
  • That same day, Messonnier announced that the C.D.C. had finalized its own test⁠, which it used to confirm the first known case of COVID-19 in the U.S.
  • The U.W. virology lab
  • started, probably in earnest in mid-January, to prepare what we call a laboratory-developed test,⁠
  • It took a team at the lab, working under the direction of Alex Greninger, about two weeks to develop a working version
  • But, as soon as Alex Azar, the Secretary of Health and Human Services, declared a public-health emergency, on February 4th, a new regulatory regime took effect. From that point on, any lab that wanted to conduct its own tests for the new coronavirus would first need to secure something called an Emergency Use Authorization from the F.D.A.
  • This shift in the regulations sounds perverse, since it restricts the use of new tests at precisely the moment they’re most needed.
  • E.U.A. process is supremely flexible.
  • triumph of modern medical science
  • hen there’s a big emergency and we feel like we should really do something, it gets hard. It’s a little frustrating. We’ve got a lot of scientists and doctors and laboratory personnel who are incredibly good at making assays. What we’re not so good at is figuring out all the forms and working with the bureaucracy of the federal government.”
  • At one point, he was very frustrated because he’d e-mailed them what we were doing so they could review it,”
  • Here we are in this SARS-CoV-2 crisis, and you have to send them something through the United States Postal Service. It’s just shocking.
  • Despite these difficulties, Jerome said, the F.D.A. ultimately proved responsive to the lab’s entreaties. “They had good and substantive feedback that made our testing better, and the response time was typically just a couple of days.”
  • believe it was, February 29th,” he said. “And then we got a specimen from one of the people who were the two original cases in Washington
  • The E.U.A. regulations, however, prohibited the lab from reporting the results to the doctors who had ordered the tests for their patients.
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    "Sharfstein, too, thinks that it's fair to criticize the federal government for not recognizing that its pandemic plans had a single point of failure. The C.D.C. quickly developed a working test, and it was understandable, at some level, that people at the Centers thought that fixing the faulty reagents for the public-health labs would be faster than shifting to an entirely different protocol. Nevertheless, Sharfstein said, "Why are we relying only on the C.D.C.? What the F.D.A. could have done, and eventually did do, is say, 'You can use other approaches.' " Even so, he said, "I don't think it's quite fair to totally blame the F.D.A. for this. The F.D.A. can design an approach to support the public-health strategy, but someone has to tell F.D.A. the public-health goal." The delay in clearly establishing those goals, he said, shows why the decision to shut down the N.S.C. directorate was so consequential. "People talk about, like, why does it matter that they closed the White House office on pandemic preparedness? This is one reason.""
Dennis OConnor

INGH Institute for Next Generation Healthcare - 0 views

  • We offer an inspirational ecosystem for healthcare professionals, patients, scientists and entrepreneurs determined to close the gap between health and care at a time when the failures of the current healthcare system call for an innovation movement to bring transformational change.
  • All our innovations will have the human experience at heart
  • The Institute for Next Generation Healthcare at Mount Sinai launched an ambitious project called LymeMIND
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    DeAunne Denmark, MD, PhD - OUR CORE PREMISE: To improve health, we must close the gap between what we know and what we do. "INGH has a new facility and venture that is the best I've seen anywhere to get a whole slew of high-resolution data collected in one shot. And supposedly, it is "not that expensive"...
Dennis OConnor

N-OF-1 RESOURCES Guides, Papers, and Posts on N-of-1 - 0 views

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    DeAunne Denmark, MD, PhD - Magnificent resource N-of-1 guide An interactive explainer on what N-of-1 is and it's purpose.
Dennis OConnor

A third of people track their health or fitness. Who are they and why are they doing it? - 0 views

  • one in three people (33 percent) currently monitor or track their health or fitness via an online or mobile
  • international GfK survey
  • China is well in the lead
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  • Brazil and the USA come next
  • followed by Germany (28 percent) and France (26 percent).
  • To download full findings for each of the 16 countries, please visit www.gfk.com/global-studies/global-study-overview/
Dennis OConnor

Milasen: The drug that went from idea to injection in 10 months - 0 views

  • itting in freezer at Boston Children’s Hospital is a drug you won’t find anywhere else. It’s called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That’s because milasen was designed to treat a single patient—a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children’s Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It’s a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug.
  • While the story of milasen could be seen as a template for other highly personalized drugs—what the field has come to call n-of-1 therapies—it also raises questions: Who should get these treatments? How will they be funded? And how will the US Food and Drug Administration regulate these projects?
  • Yu was intrigued. He reached out and offered to do whole-genome sequencing on Mila, her parents, and her younger brother.
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  • Mila’s mom, Julia Vitarello, had started a group called Mila’s Miracle Foundation to raise money to develop a gene therapy for her daughter.
  • Julia Vitarello, Mila's mother In March, Yu’s team found that a piece of DNA called a retrotransposon—the genetic remnants of viruses scattered throughout all of our genomes—had spontaneously inserted itself in the middle of a noncoding region of Mila’s CLN7 gene.
  • Black told Yu to renegotiate with the FDA. The 3-month safety study in rats, followed by another couple months to report the data, would take too long. After a letter from Vitarello outlining Mila’s decline, the FDA made a concession: Mila could get the drug after just 1 month of testing, so long as the rat studies continued to 3 months to understand any long-term toxicity.
  • Today, Mila continues to get injections of her drug approximately every 2 months. She used to have up to 30 seizures a day, each lasting more than a minute. Now, she only has a few a day, and they don’t last long,
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    "Sitting in freezer at Boston Children's Hospital is a drug you won't find anywhere else. It's called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That's because milasen was designed to treat a single patient-a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children's Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It's a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug."
Dennis OConnor

Approaches to governance of participant-led research: a qualitative case study | BMJ Open - 0 views

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    "Prospective consent and governance principles for participant-led research Nine themes emerged from discussions and interviews relating to informed consent in and governance of PLR. As this PLR was driven by people with different backgrounds asking personal questions, we found that ethical reflection needed to be ongoing and tailored to the individual. For this reason, prospective governance principles were drafted rather than codified rules. Many of the themes were expressed over the course of our PLR as an ongoing informed consent. The process, fostered via frequent communication, helped to reinforce trust among participants and organisers.43 44 Transparency: All relevant information about the project should be actively shared among participants and participant-organisers, including the source of research funding, equipment selection, data management protocols, risks and benefits and conflicts of interest. Access to Expertise: Participant-led research (PLR) requires access to experts (eg, in experimental design, data analysis, research ethics) so that participants can rigorously carry out single-subject experiments.45 Data Access & Control: The participant has the right and ability to manage their own data, and has the final say in what they collect about themselves. Right to Withdraw: Participants have a right to reduce or withdraw their participation at any time. Relevance: PLR addresses questions of relevance to the participants. Beneficence: The participant actively reflects on the balance of benefits and risks of participation and freely choose whether to participate. Responsibility: PLR requires that the participant actively consider the potential benefits and harms of the project to both themselves and others. The responsibility to stay informed is an ongoing process, not a one-time decision. Flexibility: Ethical reflection in PLR should be tailored to individual needs and to the specific context, rather than be handled with 'one size fits all
Dennis OConnor

Design and Implementation of Participant-Led Research - Quantified Self - 0 views

  • THE QUANTIFIED SELF is about making personally relevant discoveries using our own self-collected data. We call this practice everyday science, a name that emphasizes its nonprofessional character. Lately we’ve begun organizing small group projects that show how collaboration can make individual projects easier. Sometimes, joining forces with others who share our question can make it possible to create both personal and generalizable health knowledge. Following the scholar Effy Vayena, we use the term “participant-led research” (PLR) to describe this approach.
  • PLR
    • Dennis OConnor
       
      Apollo / Chi gong? Is this our PLR.? Mainly n=1. No collaboration on a mutual research project.
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    THE QUANTIFIED SELF is about making personally relevant discoveries using our own self-collected data. We call this practice everyday science, a name that emphasizes its nonprofessional character. Lately we've begun organizing small group projects that show how collaboration can make individual projects easier. Sometimes, joining forces with others who share our question can make it possible to create both personal and generalizable health knowledge. Following the scholar Effy Vayena, we use the term "participant-led research" (PLR) to describe this approach.
Dennis OConnor

m.c. schraefel: design for innovation, creativity, discovery - 0 views

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    "prof m.c. schraefel, phd,fbcs, ceng, cscs (lower case deliberate). Professor of Computer Science and Human Performance, Fellow, british computer society, Research Chair, Royal Academy of Engineering, Chartered Engineer. Head, Agents Interaction and Complexity Group And now a wee bit more: Deputy Head of Department, Research, and current REF champion (for those in the UK) for CS."
Dennis OConnor

Project Apollo - QuiGong N=1 with Master Lui - YouTube - 0 views

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    This YouTube Edition should work! Here is the 'on the fly' video of our encounter with Master Lu. Jan wore the gut monitor for the short session in Oceanside. She followed up with a much longer (1 hour) session with Master Lu two days later. She was able to walk without a cane for the first time during those sessions. Subsequently she has been able to walk (in PT) barefoot without a cane.
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    I'll be posting some video of Janice walking shortly after seeing Master Lui (soon). ~ Dennis
Dennis OConnor

Sayali Phatak | LinkedIn - 0 views

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    "Sayali Phatak PhD Candidate in Nutritional and Exercise Sciences at Arizona State University San Diego, California"
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