How Technology Can Help Overcome Barriers to Getting Effective Therapies into Patients with Ultra Rare Disorders
The following is a guest article by Dr. Zach Landman, Co-Founder of Moonshots for Unicorns. As a physician who trained at UCSF, Harvard, and Stanford, I assumed that when my youngest daughter, Lucy – at 10-months old – was diagnosed with an ultra-rare genetic disorder of glycosylation called PGAP3, the answers would reside within a hospital or academic laboratory. Unfortunately, my pediatrician wife and I were told that our smiling, seemingly healthy babbling 10-month-old baby would likely never walk normally, never talk, and was likely to develop severe and refractory seizures at some point in her childhood. ...
Source: EMR and HIPAA - September 27, 2022 Category: Information Technology Authors: Guest Author Tags: Clinical Healthcare IT AAV9 ASO CRISPR Dr. Zach Landman epalrestat Gene Therapy Invitae Patient Stories Patients Perlara PGAP3 PMM2 PRAX-222 Rare Diseases SCN2A SMA-1 Source Type: blogs

3 Reasons Why Patient Design Must Replace The Patient-Centricity Illusion
What is the difference between patient design and patient centricity? Why is the former a concept we need to embrace in the future of medicine, and why is it time to forget about the latter? These are the questions we examined in our latest paper published in the Journal of Medical Internet Research, authored by The Medical Futurist Dr Bertalan Mesko and patient scholar Dave deBronkart – widely known as ePatient Dave.  Patient centricity has been the buzzword of the past two decades, especially often used in the 2010s, from pharma companies to healthcare providers, it was loudly advertised everywhere. As nice...
Source: The Medical Futurist - September 27, 2022 Category: Information Technology Authors: Andrea Koncz Tags: TMF E-Patients Future of Medicine Healthcare Design study patient empowerment patient design Digital Health Trend Study Future of healthcare patient centricity Source Type: blogs

Contrasting results of REDUCE-IT and STRENGTH trials of Omega 3
Contrasting results of REDUCE-IT [1] and STRENGTH [2] trials of Omega 3 fatty acid preparations have caught the attention of scientific community. Icosapent ethyl, a highly purified eicosapentaenoic acid ethyl ester was evaluated in REDUCE-IT (Reduction of Cardiovascular Events With Icosapent Ethyl-Intervention Trial). In STRENGTH trial carboxylic acid formulation of eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) were used. REDUCE-IT was a multicenter, randomized, double blind, placebo controlled trial. Patients enrolled had established cardiovascular disease or diabetes with other risk factors. They were rece...
Source: Cardiophile MD - September 27, 2022 Category: Cardiology Authors: Johnson Francis Tags: General Cardiology Source Type: blogs

Commentators and Journalists Weigh In On Digital Health And Related Privacy, Safety, Social Media And Security Matters. Lots Of Interesting Perspectives - September 27, 2022.
Conclusions:This study revealed strong and consistent patterns of association between digital health literacy and the use of a web-based PHR. The results indicate potential actions for promoting PHR uptake, including improving digital technology and skill experiences that may improve digital health literacy and willingness to engage in web-based PHR. Uptake may also be improved through more responsive digital services, strengthened health care, and better social support. A holistic approach, including targeted solutions, is needed to ensure that web-based PHR can realize its full potential to help reduce health inequities....
Source: Australian Health Information Technology - September 27, 2022 Category: Information Technology Authors: Dr David G More MB PhD Source Type: blogs

A Small Lifespan Study of Combined Interventions
My attention was drawn recently to a small mouse life span study run by one of the groups that has been in the longevity community for a while now. It is interesting for testing combinations of interventions that have in the past been demonstrated to modestly slow aging in mice (such as rapamycin), or modestly improve aspects of cell function in old tissues (such as nicotinamide mononucleotide). Combinatorial studies are rare in academia and industry, for reasons that have a lot to do with (a) the perverse incentives produced by the existence of intellectual property, in that the rights to use specific interventions can be...
Source: Fight Aging! - September 26, 2022 Category: Research Authors: Reason Tags: Medicine, Biotech, Research Source Type: blogs

Fight Aging! Newsletter, September 26th 2022
This study examined the dose-response association between daily step count and intensity and incidence of all-cause dementia among adults in the UK. This was a UK Biobank prospective population-based cohort study (February 2013 to December 2015) with 6.9 years of follow-up (data analysis conducted May 2022). A total of 78,430 of 103,684 eligible adults aged 40 to 79 years with valid wrist accelerometer data were included. Registry-based dementia was ascertained through October 2021. We found no minimal threshold for the beneficial association of step counts with incident dementia. Our findings suggest that approxima...
Source: Fight Aging! - September 25, 2022 Category: Research Authors: Reason Tags: Newsletters Source Type: blogs

Five Ways To Stop Shiny Object Syndrome
Long before“Shiny Object Syndrome” was coined as a term, an insignificant blogger from Utah referred to a similar condition and called it Multi-Irons Syndrome. Are they the same thing?Shiny Object Syndrome — The Fancy Term for Something You’ve Been Doing All Your LifeThere is often a difference between what an expression means when it is coined and how people end up using it. People often don’t see eye to eye on these things. One group will insist on the academic or dictionary usage of a term or word, while the popular usage tromples all over them. Irregardless, we don’t have a lot of contro...
Source: The Splintered Mind by Douglas Cootey - September 25, 2022 Category: Psychiatry Tags: ADHD Depression Goodreads Source Type: blogs

Weekly Overseas Health IT Links –24th September, 2022.
This article makes the case and explains what will be required to make it happen.We hear a lot about “digital health” these days. As data about our health piles up — thanks to sources like electronic health records, personal fitness apps and gadgets, and home genome test kits — weshould understand a lot more than we used to about what ’s wrong with our health and what to do about it. But having a lot of data is not enough. We have to be aware of what we have, understand what it means, and act on that understanding. While the challenges are in some ways more acute in the United States because of its fragmented sys...
Source: Australian Health Information Technology - September 24, 2022 Category: Information Technology Authors: Dr David G More MB PhD Source Type: blogs

Required Diversity Statements on Campus: Are They Constitutional?
Walter OlsonRequired statements on diversity, equity and inclusion (DEI) are fast becoming a part of admissions and hiring at universities and professional schools. “A review of the admissions process at 50 of the top-ranked medical schools found that 36 asked applicants their views on, or experience in, DEI efforts,”according to a recent report by Laura L. Morgan for the advocacy group Do No Harm.Controversy has mounted over to the extent to which these requirements,in the words of Princeton's Keith Whittington, function as "political litmus tests, requiring that scholars pledge themselves to believe and advance a set...
Source: Cato-at-liberty - September 23, 2022 Category: American Health Authors: Walter Olson Source Type: blogs

Summarizing the State of Aging Research
Providing a summary of the present state of aging research is a tall order, given the rapid growth in the field, and great breadth of work in both academia and industry, but the authors of this lengthy review paper take a swing at it. They look at areas of interest, new and well-established, apply a loose taxonomy to diverse initiatives, and attempt to draw it all together into a cohesive whole. The thrust of the field nowadays is towards intervention, attempting to slow or reverse aging in order to treat and prevent age-related disease. The important debates are over which strategies are more likely versus less likely to ...
Source: Fight Aging! - September 23, 2022 Category: Research Authors: Reason Tags: Daily News Source Type: blogs

Specific Learning Disability Identification in an RtI Method: Do Measures of Cognitive Ability Matter? - Hajovsky - Learning Disabilities Research & Practice - Wiley Online Library
This study examined the extent to which cognitive ability index scores predicted multidisciplinary teams ' (MDT) SLD identification within a response-to-intervention (RtI) method after accounting for RtI slope and norm-referenced achievement scores. Results showed that four achievement composite scores (i.e., basic reading, reading comprehension, math computation, and math problem solving) and two cognitive ability index scores (i.e., crystallized ability, working memory) predicted MDT-determined SLD, explaining 81% of the variance. The inclusion of academic achievement and cognitive ability index scores predicted MDT-dete...
Source: Intelligent Insights on Intelligence Theories and Tests (aka IQ's Corner) - September 22, 2022 Category: Neuroscience Source Type: blogs

The Macro View – Health, Economics, and Politics and the Big Picture. What I Am Watching Here And Abroad.
September 22, 2022 Edition-----We will see the closure on the Mourning Period for QE!! In Australia tomorrow, We can then move on to the next big issue, which will surely be the progress in the Russo-Ukrainian war and the associated issues with China and Russia.The US seems – with the rest of the world – to be moving into recession.King Charles has now been to all his UK Realms and will now quietly let PM Trass get back to running the UK. God help her …In Australia we have to now get on with life and the economic disaster we seem to be facing.-----Major Issues.-----https://www.afr.com/politics/federal/oddly-enough-th...
Source: Australian Health Information Technology - September 22, 2022 Category: Information Technology Authors: Dr David G More MB PhD Source Type: blogs

When Medical Error Becomes Personal, Activism Becomes Painful
BY MICHAEL MILLENSON In the mid-1990s, researching a book about the quality of medical care, I discovered how the profession had for years been ignoring evidence about the appalling death toll from preventable medical error. Though I’d never myself experienced an error, I became an activist. Recently, however, a relative was a victim, and the frustrating persistence of error became personally painful. Thanks to my relative being acutely aware of the need to be alert (and a bit of luck), no harm was caused by what could have been a serious medication mistake. That was the good news. The bad news is that even...
Source: The Health Care Blog - September 21, 2022 Category: Consumer Health News Authors: Ryan Bose-Roy Tags: Medical Education Medical Practice medical error Michael Millenson Patient Safety World Patient Safety Day Source Type: blogs

Lofgren, Cheney Introduce Bill to Reform the Electoral Count Act
ConclusionOn the whole, both versions of ECA reform represent thoughtful, carefully considered attempts to answer some very complex constitutional and practical questions.While my purpose here is to analyze the policy merits and not the political path forward, the widely shared presumption is that ECRA, with its broader bipartisan support in the Senate, is likely to be the vehicle that ultimately moves towards passage. But the timing of PERA ’s introduction and possible passage by the House presents a good opportunity for the Senate to adopt some of its most important contributions when ECRA receives its committee markup...
Source: Cato-at-liberty - September 20, 2022 Category: American Health Authors: Andy Craig Source Type: blogs

Nintedanib as a Potential Senolytic Drug
Senescent cells accumulate with age, and their presence contributes to chronic inflammation and many other age-related disruptions to normal tissue function. Academia and industry are engaged in many programs aimed at the creation of senolytic treatments that can selectively destroy senescent cells. The most proven senolytic treatment to date is the dasatinib and quercetin combination, shown to partially clear senescent cells from tissues in both old mice and old humans. Dasatinib is a tyrosine kinase inhibitor, and here researchers report their evidence in support another tyrosine kinase inhibitor, nintedanib, to be usefu...
Source: Fight Aging! - September 19, 2022 Category: Research Authors: Reason Tags: Medicine, Biotech, Research Source Type: blogs