Empowered Patient Podcast

Karen Jagoda

Empowered Patient Podcast with Karen Jagoda is a window into the latest innovations in digital health, the changing dynamic between doctors and patients, and the emergence of precision medicine. The show covers such topics as aging in place, innovative uses for wearables and sensors, advances in clinical research, applied genetics, drug development, and challenges for connected health entrepreneurs.

  1. HÁ 18 H · BÔNUS

    Advancing Research on Ataxia for Development of Therapeutics and Patient Education with Andrew Rosen NAF TRANSCRIPT

    Andrew Rosen, Chief Executive Officer of the National Ataxia Foundation, has a dual mission of accelerating research for treatments and cures for Ataxia while supporting the patients affected by this rare disease. Ataxia describes both a group of hereditary genetic diseases and symptoms of lack of coordination seen in other conditions.  While genetic tests exist for hereditary Ataxia, a significant challenge in drug development has been the lack of a reliable biomarker. To encourage drug development, NAF has funded translational research and the world's most extensive study for SCAs, Spinocerebellar Ataxias, providing new data on the progression of the disease and for the design of future trials. Andrew explains, "NAF has been around for a long time. We were founded in the late 1950s by a neurologist in western Minnesota who had a disease called Ataxia in his family. And NAF's mission has really been twofold ever since that. Our formal statement is that we are trying to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. And so we really focus on research and support. We do a lot in the research world. We fund grants for researchers who are looking into the various types of Ataxia. You'd be hard pressed to find an Ataxia researcher in the world, I think I can say now at this point that hasn't received a grant from NAF at one time or another in their career. We also do a lot of translational-type research. We fund the largest natural history study in Ataxias."   "So, the term ataxia itself is even complex because it both describes a genetic disease, and I think of that as capital 'A' - Ataxia, but it's also a symptom of many other conditions. So small 'a', if you will. Ataxia just means a lack of coordination. It comes from a Greek word. And so what I mean by both hereditary and other things is if you, for instance, have too much to drink, you would show signs of Ataxia. You might stumble when you walk, and your speech might be slurred. Those are the two classic symptoms of hereditary Ataxia. Right. So that's really the Ataxias that we at NAF focus on. So hereditary, as in passed from parent to child, there are several hundred forms of hereditary Ataxia, and they continue to find more as more specific genetic mutations are discovered year after year now."  #NationalAtaxiaFoundation #Ataxia #PatientAdvocacy #RareDisease #SCA ataxia.org Listen to the podcast here

  2. HÁ 18 H

    Advancing Research on Ataxia for Development of Therapeutics and Patient Education with Andrew Rosen NAF

    Andrew Rosen, Chief Executive Officer of the National Ataxia Foundation, has a dual mission of accelerating research for treatments and cures for Ataxia while supporting the patients affected by this rare disease. Ataxia describes both a group of hereditary genetic diseases and symptoms of lack of coordination seen in other conditions.  While genetic tests exist for hereditary Ataxia, a significant challenge in drug development has been the lack of a reliable biomarker. To encourage drug development, NAF has funded translational research and the world's most extensive study for SCAs, Spinocerebellar Ataxias, providing new data on the progression of the disease and for the design of future trials. Andrew explains, "NAF has been around for a long time. We were founded in the late 1950s by a neurologist in western Minnesota who had a disease called Ataxia in his family. And NAF's mission has really been twofold ever since that. Our formal statement is that we are trying to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. And so we really focus on research and support. We do a lot in the research world. We fund grants for researchers who are looking into the various types of Ataxia. You'd be hard pressed to find an Ataxia researcher in the world, I think I can say now at this point that hasn't received a grant from NAF at one time or another in their career. We also do a lot of translational-type research. We fund the largest natural history study in Ataxias."   "So, the term ataxia itself is even complex because it both describes a genetic disease, and I think of that as capital 'A' - Ataxia, but it's also a symptom of many other conditions. So small 'a', if you will. Ataxia just means a lack of coordination. It comes from a Greek word. And so what I mean by both hereditary and other things is if you, for instance, have too much to drink, you would show signs of Ataxia. You might stumble when you walk, and your speech might be slurred. Those are the two classic symptoms of hereditary Ataxia. Right. So that's really the Ataxias that we at NAF focus on. So hereditary, as in passed from parent to child, there are several hundred forms of hereditary Ataxia, and they continue to find more as more specific genetic mutations are discovered year after year now."  #NationalAtaxiaFoundation #Ataxia #PatientAdvocacy #RareDisease #SCA ataxia.org Download the transcript here

    19min
  3. HÁ 1 DIA · BÔNUS

    Medical App for Medication Management Supports Clinicians and Patients with Anne Meneghetti epocrates TRANSCRIPT

    Anne Meneghetti, Executive  Director of epocrates, is focused on medication management and providing tools for clinicians to better handle challenges from the increasing population of patients who take multiple drugs and are treating a wide variety of conditions. The epocrates app provides access to drug information, pill identification, checks for interactions, and calculates dosing, reducing medication errors and patient confusion. Polypharmacy patients are further at risk when they are taking over-the-counter drugs and supplements, requiring regular medication reconcilation to avoid serious drug interactions. Anne explains, "So epocrates has been around since the late 1990s, and it's the number one mobile medical app in the country in terms of physician usership. And it's both a free model and a subscription model. The main reason why clinicians use epocrates is because of the drug information. So, quickly looking up a drug dose, for example, if a drug needs to be prescribed by weight, what is the calculation for that? And there's no way that clinicians can memorize 8,000 drugs. So having it in a quick, easy-to-use app is really crucial in modern times. And sometimes it's not that the clinician doesn't know the dose of the drug, it's just that validation. When you pick up an app and look and see, yep, that's what I thought it was. And that validation, that sense of confidence, is something really precious for a busy clinician. We also use it for drug interactions." "We find that clinicians really value drug interactions because you can't memorize 8,000 drugs interacting with 8,000 other drugs. And your EHR might tell you if you're trying to prescribe two drugs at the same time, your EHR might tell you, oh, red light, green light, yellow light. But a really good drug reference, like epocrates can tell you, if you're going to prescribe these two drugs together, you need to cut the dose of this one in half and you need to monitor the potassium levels. We find that clinicians really value drug interactions because you can't memorize 8,000 drugs interacting with 8,000 other drugs. And your EHR might tell you if you're trying to prescribe two drugs at the same time, your EHR might tell you, oh, red light, green light, yellow light. But a really good drug reference, like epocrates can tell you, if you're going to prescribe these two drugs together, you need to cut the dose of this one in half and you need to monitor the potassium levels."    #epocrates #MedicationManagement #Polypharmacy #DrugInteractions #DigitalHealth epocrates.com Listen to the podcast here

  4. HÁ 1 DIA

    Medical App for Medication Management Supports Clinicians and Patients with Anne Meneghetti epocrates

    Anne Meneghetti, Executive  Director of epocrates, is focused on medication management and providing tools for clinicians to better handle challenges from the increasing population of patients who take multiple drugs and are treating a wide variety of conditions. The epocrates app provides access to drug information, pill identification, checks for interactions, and calculates dosing, reducing medication errors and patient confusion. Polypharmacy patients are further at risk when they are taking over-the-counter drugs and supplements, requiring regular medication reconcilation to avoid serious drug interactions. Anne explains, "So epocrates has been around since the late 1990s, and it's the number one mobile medical app in the country in terms of physician usership. And it's both a free model and a subscription model. The main reason why clinicians use epocrates is because of the drug information. So, quickly looking up a drug dose, for example, if a drug needs to be prescribed by weight, what is the calculation for that? And there's no way that clinicians can memorize 8,000 drugs. So having it in a quick, easy-to-use app is really crucial in modern times. And sometimes it's not that the clinician doesn't know the dose of the drug, it's just that validation. When you pick up an app and look and see, yep, that's what I thought it was. And that validation, that sense of confidence, is something really precious for a busy clinician. We also use it for drug interactions." "We find that clinicians really value drug interactions because you can't memorize 8,000 drugs interacting with 8,000 other drugs. And your EHR might tell you if you're trying to prescribe two drugs at the same time, your EHR might tell you, oh, red light, green light, yellow light. But a really good drug reference, like epocrates can tell you, if you're going to prescribe these two drugs together, you need to cut the dose of this one in half and you need to monitor the potassium levels. We find that clinicians really value drug interactions because you can't memorize 8,000 drugs interacting with 8,000 other drugs. And your EHR might tell you if you're trying to prescribe two drugs at the same time, your EHR might tell you, oh, red light, green light, yellow light. But a really good drug reference, like epocrates can tell you, if you're going to prescribe these two drugs together, you need to cut the dose of this one in half and you need to monitor the potassium levels."    #epocrates #MedicationManagement #Polypharmacy #DrugInteractions #DigitalHealth epocrates.com Download the transcript

    28min
  5. HÁ 2 DIAS · BÔNUS

    New Biologic Drug for Rare IgG4-Related Disease with Dr. Adam Kilian St. Louis University School of Medicine TRANSCRIPT

    Dr. Adam Kilian, Director of the Rheumatology Fellowship Training Program at the St. Louis University School of Medicine, focuses on IgG4-related disease, a rare multi-organ disease that has only recently been recognized due to significant diagnostic challenges. The MITIGATE trial is a landmark study that demonstrated that the first FDA-approved treatment, UPLIZNA from Amgen, provides an effective, targeted, steroid-free therapy. The approval of this drug is driving awareness in the medical community about IgG4-RD and whether the disease should be considered after inconclusive results for other suspected conditions. Adam explains, "IgG4-related disease is a rare disease that affects many organ systems. It's a chronic systemic, fibroinflammatory disease that can affect almost any organ system. And it will usually present with these tumor-like inflammatory masses that can cause scarring and lead to organ failure." "Our understanding of it continues to evolve, and it's had a really interesting story over the last century because IgG4-related disease affects so many different organ systems. Over the past century, there were actually many different diagnoses that were recognized, which now all fall under the umbrella of IgG4-related disease. Different scientists and physicians around the world over the years recognized the different manifestations of the disease in the pancreas, in the lymph nodes, in the head and neck, in the kidneys, or in the blood vessels. And it's only been in the last 20 years or so that we have recognized that actually all of these different disease entities from the last century are actually all manifestations of this disease, IgG4, IgG4-related disease." "The clinical trial is called the MITIGATE trial, and it's a very seminal clinical trial in rheumatology from the last several years. This was the first-ever phase three double-blind, placebo-controlled, randomized controlled trial in IgG4-related disease. This was a huge trial. It was global. It was conducted in 22 countries with multiple specialties coordinating this trial. It was 52 weeks long, and its purpose was to evaluate the effectiveness and the safety of UPLIZNA in patients who have IgG4-related disease."  #MITIGATETrial #IgG4RelatedDisease #IgG4RD #UPLIZNA UPLIZNA Listen to the podcast here

  6. HÁ 2 DIAS

    New Biologic Drug for Rare IgG4-Related Disease with Dr. Adam Kilian St. Louis University School of Medicine

    Dr. Adam Kilian, Director of the Rheumatology Fellowship Training Program at the St. Louis University School of Medicine, focuses on IgG4-related disease, a rare multi-organ disease that has only recently been recognized due to significant diagnostic challenges. The MITIGATE trial is a landmark study that demonstrated that the first FDA-approved treatment, UPLIZNA from Amgen, provides an effective, targeted, steroid-free therapy. The approval of this drug is driving awareness in the medical community about IgG4-RD and whether the disease should be considered after inconclusive results for other suspected conditions. Adam explains, "IgG4-related disease is a rare disease that affects many organ systems. It's a chronic systemic, fibroinflammatory disease that can affect almost any organ system. And it will usually present with these tumor-like inflammatory masses that can cause scarring and lead to organ failure." "Our understanding of it continues to evolve, and it's had a really interesting story over the last century because IgG4-related disease affects so many different organ systems. Over the past century, there were actually many different diagnoses that were recognized, which now all fall under the umbrella of IgG4-related disease. Different scientists and physicians around the world over the years recognized the different manifestations of the disease in the pancreas, in the lymph nodes, in the head and neck, in the kidneys, or in the blood vessels. And it's only been in the last 20 years or so that we have recognized that actually all of these different disease entities from the last century are actually all manifestations of this disease, IgG4, IgG4-related disease." "The clinical trial is called the MITIGATE trial, and it's a very seminal clinical trial in rheumatology from the last several years. This was the first-ever phase three double-blind, placebo-controlled, randomized controlled trial in IgG4-related disease. This was a huge trial. It was global. It was conducted in 22 countries with multiple specialties coordinating this trial. It was 52 weeks long, and its purpose was to evaluate the effectiveness and the safety of UPLIZNA in patients who have IgG4-related disease."  #MITIGATETrial #IgG4RelatedDisease #IgG4RD #UPLIZNA UPLIZNA Download the transcript here

    21min
  7. HÁ 3 DIAS · BÔNUS

    Early Detection of Alzheimer's Disease Critical to Managing the Rising Dementia Epidemic with Dr. Thomas Wisniewski NYU Langone TRANSCRIPT

    Dr. Thomas Wisniewski, Director of NYU Langone's Alzheimer's Disease Research Center, shares insights from a recent study that projects new dementia cases in the US will double by 2060. New diagnostic tools have made it easier to identify early signs of Alzheimer's, and disease-modifying therapies are being approved, which can be effective if patients are treated in the earliest stages of the disease. AI is seen as a tool to help identify at-risk patients and routinely screen patients to manage the growing need for access to dementia care.  Thomas explains, "This was a study that was led by the NY Optimal Institute, which is directed by Dr. Joe Resh, who's really a leader in this area and many public health issues. He did a very thorough analysis along with his team that the annual number of incident dementia cases in the United States is projected to increase from current estimates of 500,000 to around 1 million in 2060. So basically doubling in white adults. Furthermore, in African Americans, this incidence of dementia rate is expected to triple, with the largest absolute increases in dementia cases going to be in the oldest old population." "There was perhaps a lack of awareness of the prevalence of dementia in past decades. But now the importance of making an accurate diagnosis and recognition of dementia is becoming much more prominent in the medical literature and in the medical profession. And that message, I think, is permeating to the lay public as well. So there hasn't been a change in the definition so much, but there is an increase in knowledge in the medical profession about the importance of making this diagnosis, and people living alone." "It's really been a dramatic change. So, apart from being a cognitive neurologist, I'm also a board-certified neuropathologist, and it used to be that making the definitive diagnosis of Alzheimer's disease required a chunk of brain. I'm delighted I don't need those chunks of brain anymore to make a diagnosis of Alzheimer's disease. There are now very clear clinical criteria and biomarker definitions for making a very accurate diagnosis of Alzheimer's disease." #NYULangoneAlzheimers #AlzheimersDisease #DiagnosingAlzheimers #AlzheimersResearch #MedAI med.nyu/centers-programs/alzheimers-disease-research/ Listen to the podcast here

  8. HÁ 3 DIAS

    Early Detection of Alzheimer's Disease Critical to Managing the Rising Dementia Epidemic with Dr. Thomas Wisniewski NYU Langone

    Dr. Thomas Wisniewski, Director of NYU Langone's Alzheimer's Disease Research Center, shares insights from a recent study that projects new dementia cases in the US will double by 2060. New diagnostic tools have made it easier to identify early signs of Alzheimer's, and disease-modifying therapies are being approved, which can be effective if patients are treated in the earliest stages of the disease. AI is seen as a tool to help identify at-risk patients and routinely screen patients to manage the growing need for access to dementia care.  Thomas explains, "This was a study that was led by the NY Optimal Institute, which is directed by Dr. Joe Resh, who's really a leader in this area and many public health issues. He did a very thorough analysis along with his team that the annual number of incident dementia cases in the United States is projected to increase from current estimates of 500,000 to around 1 million in 2060. So basically doubling in white adults. Furthermore, in African Americans, this incidence of dementia rate is expected to triple, with the largest absolute increases in dementia cases going to be in the oldest old population." "There was perhaps a lack of awareness of the prevalence of dementia in past decades. But now the importance of making an accurate diagnosis and recognition of dementia is becoming much more prominent in the medical literature and in the medical profession. And that message, I think, is permeating to the lay public as well. So there hasn't been a change in the definition so much, but there is an increase in knowledge in the medical profession about the importance of making this diagnosis, and people living alone." "It's really been a dramatic change. So, apart from being a cognitive neurologist, I'm also a board-certified neuropathologist, and it used to be that making the definitive diagnosis of Alzheimer's disease required a chunk of brain. I'm delighted I don't need those chunks of brain anymore to make a diagnosis of Alzheimer's disease. There are now very clear clinical criteria and biomarker definitions for making a very accurate diagnosis of Alzheimer's disease." #NYULangoneAlzheimers #AlzheimersDisease #DiagnosingAlzheimers #AlzheimersResearch #MedAI med.nyu/centers-programs/alzheimers-disease-research/ Download the transcript here

    23min
4,9
de 5
18 avaliações

Sobre

Empowered Patient Podcast with Karen Jagoda is a window into the latest innovations in digital health, the changing dynamic between doctors and patients, and the emergence of precision medicine. The show covers such topics as aging in place, innovative uses for wearables and sensors, advances in clinical research, applied genetics, drug development, and challenges for connected health entrepreneurs.

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