NIMH's 75th Anniversary Symposium–In-Person Registration Closing Soon

NIMH's 75th Anniversary Symposium–In-Person Registration Closing Soon In September, the National Institute of Mental Health (NIMH) is launching its yearlong 75th anniversary celebration with "The Evolution of Mental Health Research" symposium, highlighting key advances in mental health research. Event date: September 13, 2023 Time: 8:30 a.m.–5:30 p.m. ET Location: Natcher Conference Center on the NIH campus in Bethesda, MD. This symposium is free, and registration is required. In-person registration will close on September 5. https://www.nimh.nih.gov/news/events/the-evolution-of-mental-health-research

AMD Days 2023 APHL, 2023

AMD Days 2023 APHL, 2023 From the website: "CDC OAMD and APHL have co-sponsored AMD day, AMD 2-day, Virtual AMD-days, and now AMD days since 2016. This symposium began as an opportunity for OAMD funded CDC projects to be shared and presented. It has evolved to be an opportunity for state and local public health laboratories, CDC laboratories to present their work, network, and hear from leaders in the field. We are excited to bring back AMD-days! This event will be held September 12-14, 2023 at the CDC Roybal Campus in Atlanta, GA." https://www.aphl.org/programs/infectious_disease/Pages/AMD-Days.aspx

The Lancet Series on racism, xenophobia, discrimination, and health

Advancing equity, diversity, and inclusion (EDI) is a commitment to health for all. The Lancet Group believes science can be an instrument for positive social change, and that journals have an important part to play in challenging systems that do not benefit everyone everywhere. https://www.thelancet.com/equity-diversity-inclusion?dgcid=hubspot_update_feature_updatealerts_laneur&utm_campaign=update-laneur&utm_medium=email&_hsmi=272193224&_hsenc=p2ANqtz--Z4KSBmoIp1QQMY7pk3CtF3YDc8rPoFFkMc2t_nZBmSfkF8GgUUEk2kVlGFG7djk54lENwNLNRJT-EDOqz_IVpkvvNSA&utm_content=272134703&utm_source=hs_email

Public Comment on Draft Recommendation Statement and Draft Evidence Review: Primary Care Interventions to Prevent Child Maltreatment

https://www.uspreventiveservicestaskforce.org/uspstf/public-comments-and-nominations/opportunity-for-public-comment The U.S. Preventive Services Task Force seeks comments on a draft recommendation statement and draft evidence review on primary care interventions to prevent child maltreatment. The Task Force is calling for more research on how to prevent child maltreatment before it occurs in children and adolescents who do not show signs or symptoms of abuse and neglect. The draft recommendation statement and draft evidence review are available for review and public comment from August 29, 2023 to September 25, 2023 here.

FDA approves multiple generics of ADHD and BED treatment (lisdexamfetamine dimesylate)

FDA has approved several first generics of Vyvanse (lisdexamfetamine dimesylate) capsules and chewable tablets for attention-deficit/hyperactivity disorder (ADHD) in patients six years and older and moderate to severe binge-eating disorder (BED) in adults. See Vyvanse’s prescribing information for details on dosing. https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-multiple-generics-adhd-and-bed-treatment?utm_medium=email&utm_source=govdelivery

sábado, 26 de agosto de 2023

TEENS AND SOCIAL MEDIA: NEW GUIDELINES FOR PARENTS

Teens and Social Media: New Guidelines for Parents By Ivanhoe Broadcast News on September 3, 2023 https://www.ivanhoe.com/?p=31174&preview=1&_ppp=ddfe27b033

ANTIBIOTIC ALERT: REDUCING DRUG OVERUSE IN KIDS!

Antibiotic Alert: Reducing Drug Overuse in Kids By Ivanhoe Broadcast News on September 2, 2023 https://www.ivanhoe.com/?p=31168&preview=1&_ppp=5967e46f75

The top 10 research priorities for pancreatitis: findings from a James Lind Alliance priority setting partnership

The top 10 research priorities for pancreatitis: findings from a James Lind Alliance priority setting partnership Sep 2023 Volume 8Number 9p771-860, e7 https://www.thelancet.com/journals/langas/issue/current

Unsilencing liver disease The Lancet Gastroenterology & Hepatology

Unsilencing liver disease The Lancet Gastroenterology & Hepatology Sep 2023 Volume 8Number 9p771-860, e7 https://www.thelancet.com/journals/langas/issue/current

viernes, 25 de agosto de 2023

Diagnosis and Treatment of Tethered Spinal Cord

https://effectivehealthcare.ahrq.gov/products/tethered-spinal-cord/protocol This review will summarize the evidence regarding diagnosis, prophylactic treatment, symptomatic treatment, and repeat surgery of tethered spinal cord. With funding from PCORI, AHRQ commissioned this work to synthesize the findings on the diagnosis and treatment of tethered spinal cord. The systematic review will support the Congress for Neurological Surgeons clinical practice guidelines.

Treatment of Stage I-III Squamous Cell Anal Cancer

Treatment of Stage I-III Squamous Cell Anal Cancer: This is an new protocol for a systematic review that will summarize the state of the evidence on treatment of stage I-III squamous cell carcinoma of the anal canal and anal margin. This systematic review will assess the effectiveness and harms of treatment for stages I-III squamous cell anal cancer. This review, funded by the Patient-Centered Outcomes Research Institute, will be used by the American Society of Clinical Oncology and the American Society of Radiation Oncology to update clinical practice guidelines.

Diagnosis and Management of Obsessive Compulsive Disorders in Children

Diagnosis and Management of Obsessive Compulsive Disorders in Children: The systematic review will summarize the findings from 1. Studies related to the accuracy of assessment tools compared to reference standard methods to identify OCD in symptomatic youth and 2. Studies of psychological and/or pharmacological treatments of OCD. This comparative effectiveness review will inform a planned update of the 2012 American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter. AACAP nominated this topic to the Patient-Centered Outcomes Research Institute, which contracted with the Agency for Healthcare Research and Quality to conduct the review. Specifically, the systematic review will summarize the findings from 1. Studies related to the accuracy of assessment tools compared to reference standard methods to identify OCD in symptomatic youth and 2. Studies of psychological and/or pharmacological treatments of OCD. The intended audience includes guideline developers, child psychiatrists and psychologists, pediatricians, family physicians, advanced practice providers, parents, and patients.

jueves, 24 de agosto de 2023

The Start-to-Finish of Orphan Drugs From regulation & policy to global pricing to gene therapies

https://www.terrapinn.com/conference/world-orphan-drug-congress/index.stm 30 October 2023 | Pre-Congress Workshops (InterContinental Barcelona - next to Fira de Barcelona) 31 October - 2 November 2023 | Main Congress Days (Fira de Barcelona Montjuic)

Training for patient representatives and advocates on leadership and communication skills 26 October 2023 - 09:00 Gdańsk, Poland

Training for patient representatives and advocates on leadership and communication skills EJP RD - European Joint Programme on Rare Diseases - Training for patient representatives and advocates on leadership and communication skills 26 October 2023 - 09:00 Gdańsk, Poland https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills-2/

Creating Awareness Connecting Families, Funding Research, Maintaining Hope.: Lafora disease: The stories of Robin & Angelina

The journeys of Robin and Angelina, two young individuals living with Lafora Disease, may be separated by thousands of miles, but they intertwine through shared experiences. Lafora disease, a terminal neurodegenerative condition affecting children, currently lacks a cure. EURORDIS sheds a light on Robin's and Angelina's stories and the brilliant work of the Chelsea’s Hope Lafora Children Research Fund. Would you like to share your story with us about life with a rare disease to support our Community article series? Contact Rhiannon Walls, our Communications Junior Manager, at rhiannon.walls@eurordis.org. https://chelseashope.org/

SATB2-Associated Syndrome Awareness Day

https://www.satb2europe.org/ Yesterday, on 22 August, our member organisation SATB2 Europe marked SATB2-Associated Syndrome Awareness Day. SATB2-Associated Syndrome (SAS), also known as Glass Syndrome or 2q33.1 Microdeletion Syndrome, is a rare genetic neurodevelopmental disorder caused by alterations of the SATB2 gene on the second chromosome. This syndrome significantly affects many organ systems and thus areas of development, primarily brain, palate, teeth and bones. To learn more about the experiences of those impacted by SAS, listen this discussion with Erika Stariha, the Founding President of SATB2 Europe and the mother of a boy with the condition. Is your organisation also aware of any upcoming awareness events that you would like to see promoted in the Community section of our monthly newsletter? If yes, contact our Communications Manager, Julien Poulain, at julien.poulain@eurordis.org.

How to START? Four pillars to optimally begin your orphan drug development

https://link.springer.com/article/10.1186/s13023-023-02845-9 Virginie Hivert, our Therapeutic Development Director, was a co-author in a position paper published this month by the Orphanet Journal of Rare Diseases. The position paper, 'How to START? Four pillars to optimally begin your orphan drug development' details best practices for initiating the process of developing medicines to treat rare conditions. The paper proposes a 'START' checklist relating to key considerations when starting an orphan drug development: STakeholder mapping, Available information on the disease, Resources, and Target patient value profile.

Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar August 2023 - 6 Sep 2023

https://www.eurordis.org/living-with-uncertainty-impact-of-trauma-mental-wellbeing-webinar/ People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity, and at a population level, the community live with the increased psychological impact associated with the rare disease journey across all stages of life. Furthermore, the rare disease community has increased exposure to social inequality and discrimination, which are risk factors affecting poor mental wellbeing. The rare disease community has identified the need to look beyond the physiological symptoms of a rare condition, and recognise the importance of psychological support as a fully integrated part of the coordination of care. Without support, there will continue to be a detrimental impact on the mental health of those affected by rare conditions, hindering them from effective participation in society. This webinar will begin by breaking down the biopsychosocial continuum and addressing the intersectional needs of our community. It will then move on to a panel discussion on living with uncertainty and the impact of trauma, ending with a discussion on the impact of living with congential malformations. The outcome of the webinar will be the launch of a public call for expressions of interest to join the new EURORDIS Mental Wellbeing Partnership Network, where patient representatives will partner with experts to identify common mental health needs and inform EURORDIS’ strategic and policy action.

Podcast: Rare on Air

https://www.eurordis.org/rare-on-air/ Finding new uses for existing medicines In our latest episode of Rare on Air, host Julien Poulain explores the potential of drug repurposing, which is the process by which new uses are discovered for already existing medicines. Julien is joined by Leonardo Panzeri, President of Italian Osteogenesis Imperfecta Association, and EURORDIS colleagues Claudia Fuchs and Judit Baijet, who all discuss the importance of patient advocates in drug repurposing efforts, as well as the EU-funded REMEDi4ALL project

BOOSTER TOWARD NEW SCIENTIFIC BREAKTROUGHS IN RARE AND PEDIATRIC DISEASES

https://www.rarediseasemoonshot.eu/ Rare Disease Moonshot, a coalition of seven organisations of which EURORDIS is a member, has issued recommendations to funders, researchers, patients, industry and other stakeholders on where public-private partnerships would bring most value in optimising clinical trials. The recommendations also include points to consider when setting up such collaborations that address the unmet needs of the rare disease community.

Welcome to the Best Practice Portal

https://webgate.ec.europa.eu/dyna/bp-portal/ Best practices in mental health Upon acknowledging the distinct mental wellbeing needs of those with chronic illnesses, the European Commission has launched a call for best practices on mental health. The Commission is seeking examples of best and promising practices on mental health from governmental and non-governmental entities, which can be submitted via the EU Best Practice Portal by Friday 29 September.

Parkinson’s disease gene variant found in study of some people of African ancestry

Parkinson’s disease gene variant found in study of some people of African ancestry NIH-supported, international study underscores importance of research of diverse populations. https://www.nih.gov/news-events/news-releases/parkinson-s-disease-gene-variant-found-study-some-people-african-ancestry

Researchers assemble the first complete sequence of a human Y chromosome

Researchers assemble the first complete sequence of a human Y chromosome New sequence reveals genomic factors in fertility, including sperm production. https://www.nih.gov/news-events/news-releases/researchers-assemble-first-complete-sequence-human-y-chromosome

MedWatch Online Voluntary Reporting Form: Correction: Hidden drug ingredients identified in products marketed for energy

https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?utm_medium=email&utm_source=govdelivery Health Fraud Product Database https://www.fda.gov/consumers/health-fraud-scams/health-fraud-product-database?utm_medium=email&utm_source=govdelivery BIG GUYS Male Energy Supplement contains hidden drug ingredient https://www.fda.gov/drugs/medication-health-fraud/big-guys-male-energy-supplement-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery Mens Maximum Energy Supplement contains hidden drug ingredient https://www.fda.gov/drugs/medication-health-fraud/mens-maximum-energy-supplement-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery Round 2 contains hidden drug ingredient https://www.fda.gov/drugs/medication-health-fraud/round-2-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery Genergy contains hidden drug ingredient https://www.fda.gov/drugs/medication-health-fraud/genergy-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery WeFun contains hidden drug ingredient https://www.fda.gov/drugs/medication-health-fraud/wefun-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery X MAX Triple Shot Energy Honey contains hidden drug ingredient https://www.fda.gov/drugs/medication-health-fraud/x-max-triple-shot-energy-honey-contains-hidden-drug-ingredient?utm_medium=email&utm_source=govdelivery

STARTUP AIMING TO KEEP KIDNEY PATIENTS OFF DIALYSIS

STARTUP AIMING TO KEEP KIDNEY PATIENTS OFF DIALYSIS Electro-hydraulic acoustic therapy could treat late-stage chronic kidney disease and delay its progression by up to a year. https://www.israel21c.org/startup-aiming-to-keep-kidney-patients-off-dialysis/

AI cancer startup collaborates with top Israeli hospital

AI cancer startup collaborates with top Israeli hospital Cloud platform enables whole genome sequencing from data derived from blood tests that can detect recurring cancer early on. https://www.israel21c.org/ai-cancer-startup-collaborates-with-top-israeli-hospital/

Drug Trials Snapshot: LUMAKRAS (SOTORASIB)

LUMAKRAS is a drug used to treat adult patients with non-small cell lung cancer (NSCLC) that is locally advanced or has spread to other parts of the body (metastatic). It should be used in patients who have been treated with at least one prior type of therapy and whose cancer has a certain type of genetic mutation (KRAS G12C). https://www.fda.gov/drugs/drug-approvals-and-databases/drug-trials-snapshot-lumakras

martes, 22 de agosto de 2023

Public policy and health in the USA miniseries: should investors own healthcare?

Public policy and health in the USA miniseries: should investors own healthcare? We are pleased to invite you to the latest event in our webinar miniseries public policy and health in the USA: should investors own healthcare?, Sept 26, 2023, at 14:00 EDT / 19:00 BST. Attendance is free and you can register for the webinar here. Tues, Sept 26, 2023 13:00 EDT / 19:00 BST https://event.on24.com/wcc/r/4261292/F83D33EB8BF67FD27D747E69F489D5E3?partnerref=hubspot_email_usinvestorshealthcare23_registration1&utm_campaign=usinvestorshealthcare23&utm_medium=email&_hsenc=p2ANqtz-9ocO9UuCNqvKDrzEYJ4NqsucxlkH4si8Pvdc_LiQ_tZ1BnsGCRL_Mk8lY_hDR8rnMhMhyPnzZl69BlgfJvEwRxLwXlYA&_hsmi=271132250&utm_content=270638876&utm_source=hs_email&hsCtaTracking=cf00ab02-c5b8-41eb-bf53-576b7acd0223%7Ce1788eb8-7603-46d7-8148-fb0020a6a949

lunes, 21 de agosto de 2023

ZOOMED OUT: REBOOTING YOUR VIRTUAL ENGAGEMENT

Zoomed Out: Rebooting Your Virtual Communication By Ivanhoe Broadcast News on August 27, 2023 https://www.ivanhoe.com/?p=31074&preview=1&_ppp=75cd9ee51b

BATTLING OBESITY IN TEENS: GROUNDBREAKING GUIDELINES FOR CHILDREN

Battling Obesity in Teens: Groundbreaking Guidelines for Children By Ivanhoe Broadcast News on August 22, 2023 https://www.ivanhoe.com/?p=31083&preview=1&_ppp=045cc5f9d2

Abdominal obesity and hydration status as protective factors against mortality in older adults: A prospective study Jarson Pedro da Costa Pereira, ... Poliana Coelho Cabral December 2023

Abdominal obesity and hydration status as protective factors against mortality in older adults: A prospective study Jarson Pedro da Costa Pereira, ... Poliana Coelho Cabral December 2023 https://www.sciencedirect.com/journal/nutrition

Pan American League of Associations for Rheumatology Guidelines for the treatment of ANCA-associated vasculitis

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(23)00128-5/fulltext "Gender bias is as entrenched as ever…with a shocking 9 out of 10 people globally reporting biases against women. It is imperative that we regain—and maintain—momentum in the drive to improve global gender equity." https://www.thelancet.com/journals/lanrhe/home

sábado, 19 de agosto de 2023

Cluster of carbapenemase-producing carbapenem-resistant Pseudomonas aeruginosa among patients in an adult intensive care unit - Idaho, 2021-2022 Cahill ME , Jaworski M , Harcy V , Young E , Ham DC , Gable P , Carter KK .

Cluster of carbapenemase-producing carbapenem-resistant Pseudomonas aeruginosa among patients in an adult intensive care unit - Idaho, 2021-2022 Cahill ME , Jaworski M , Harcy V , Young E , Ham DC , Gable P , Carter KK . https://phgkb.cdc.gov/PHGKB/cdcPubFinder.action?Mysubmit=update

The effect of personalized intelligent digital systems for self-care training on type II diabetes: a systematic review and meta-analysis of clinical trials. Mozhgan Tanhapour et al. Acta Diabetol 2023

The effect of personalized intelligent digital systems for self-care training on type II diabetes: a systematic review and meta-analysis of clinical trials. Mozhgan Tanhapour et al. Acta Diabetol 2023 https://phgkb.cdc.gov/PHGKB/translationClip.action?action=nonGhome

What is Ocular Albinism?

Ocular albinism (OA) is an inherited genetic condition that primarily affects the pigments in the eyes. https://www.news-medical.net/health/What-is-Ocular-Albinism.aspx

What is Akathisia?

Akathisia is a common movement disorder associated with the use of antipsychotic medications. https://www.news-medical.net/health/What-is-Akathisia.aspx