(1/4) TWO-WEEKS: Webinar exploring distributional cost-effectiveness analysis (#DCEA) in #genomicmedicine 🗓️ Date & time: 6-7pm Wed 8 Oct EDT / 10-11pm Wed 8 Oct UTC / 9-10am Thurs 9 Oct AEDT 📍 Online, download the calendar invitation (+Zoom link) here: healtheconomics.org/event/advanc...

The recording from this event is now available! #mendelianrandomisation #mendelianrandomization #genomics #healtheconomics #costeffectiveness #CEA www.youtube.com/watch?v=ui0n...

#Duchennemusculardystrophy affects ~2 in 10,000 boys, yet #diagnosis in the U.S. still comes later, around age 5. #Newbornscreening can help catch #DMD earlier when #care & emerging #therapies can make the biggest difference. #RareDisease #Genomics #pediatric @hadleyssmith.bsky.social

#Metachromatic #leukodystrophy (#MLD) is rare—1 in 100,000 births—but devastating if missed. A new two-tier #newbornscreen can catch it early, enabling #genetherapy that improves #survival & motor #outcomes. #pediatric #genomics #rarediseases @hadleyssmith.bsky.social Read More: buff.ly/qx2xQcx

(1/4) INVITATION: Applying #MendelianRandomization in #HealthEconomics - Bridging #Genomics & #CostEffectiveness 🗓️ Tues 16 Sept ⏰8-9 AM UTC / 9-10 AM BST / 6-7 PM AEST 📍Online, download the calendar invite here: healtheconomics.org/event/applyi...

Looking forward to participating in this webinar to discuss our work on distributional cost-effectiveness analysis in genomic medicine, recently published in Value in Health www.sciencedirect.com/science/arti...

U.S. newborn screening is entering a new era, marked by the promise of genomic technologies and absence of a key national guidance committee. @mattmotta.bsky.social and I discuss recent events in the newborn screening policy space in a new JAMA Pediatrics Viewpoint. jamanetwork.com/journals/jam...

Interested in economic impacts of genomic medicine? Our iHEA Special Interest Group on economics of genomics would love to hear from you via the survey below!

Do investigators have obligations to the relatives of genomic research participants who have a significant result? We explored cascade screening across the clinical-research divide in focus groups with clinicians, patient representatives, and ELSI scholars. www.gimopen.org/article/S294...

New paper! @hadleyssmith.bsky.social and team's paper An end to #genetic exceptionalism: reframing the #ethics of #genomicsequencing for rapid #neonatal #diagnosis is featured in Semin Perinatol! Read More Here: buff.ly/Zh7Js2G

Glad to see ACMG stepping up to support the continuation of evidence-based reviews to inform national newborn screening recommendations after termination of the federal advisory committee

(1/6) Calling all Early Career Researchers & Health Economists interested in Genomics & Precision Medicine! The #IHEA Econ-Omics SIG invites you to our ECR Journal Club webinar: 🗓️ Tuesday, 15 July ⏰ 8-10am UTC | 9-11am BST | 6-8pm AEST 🔗 Register: healtheconomics.org/event/early-...

It was wonderful to have @sallysansom.bsky.social visit with us at @cherpdpm.bsky.social & the Precision Medicine Translational Research (PROMoTeR) Center and learn more about her work to advance rigor of patient-centered outcome measurement in #genomics and #raredisease!

Considering using distributional cost-effectiveness analysis to evaluate a genomic medicine intervention? We specify a commonly used conceptual framework, the staircase of inequality, for the genomic medicine context. Read more here: urldefense.com/v3/__https:/...

We are excited to share that CHeRP fellow Ramesh Lamsal, PhD will be presenting at our next CHeRP Seminar on 5/19 at 1pm! He will present Beyond the #Patient: #Methods for Including #Family Spillovers in #Pediatric and #Maternal Cost-Utility #Analyses!

#Conference #ISPORAnnual #HEOR #Genomics #rarediseases #patient

Join us on May 2 for an introduction to two types of NIH grants for research training and career development. We will cover the basics of the grant application process and explore the purpose of the K99/R00 and K01 awards. Register: ow.ly/4t4r50VCEhu

New Publication! CHeRP faculty Hadley S. Smith and peers' paper #Rare #disease narratives on #socialmedia: A content #analysis is featured in Genetics in Medicine Open! Read More Here: buff.ly/2HZPBWN

@jbuchanan-ox.bsky.social @iliasgoranitis.bsky.social @hadleyssmith.bsky.social @sallysansom.bsky.social

Looking forward to joining this panel at @asnpls.bsky.social to discuss findings from clinical and survey research studies in pediatric genomic medicine.

(1/4) Attention Early Career Researchers (ECRs)! We are still collecting expressions of interest for our ECR ‘Preprint Club’ series for 2025. #IHEA #healtheconomics #genomics #precisionmedicine

The longtime director of the National Human Genome Research Institute is stepping down, as the larger NIH braces for more changes.

Grateful for the community and continuous career development opportunities that @smdm.bsky.social provides

Taylor’s training was supported by an NIH Diversity Supplement to my R00, a program that aimed to increase research workforce diversity by supporting students, post-docs, and faculty from underrepresented backgrounds — and that no longer exists.

In 2022, I participated in the important NHGRI Workshop "Future Directions in Genomics & Health Equity Research". The program & accompanying materials were available online. They are now gone. This makes me so sad, especially for our wonderful colleagues at NIH who care about this work deeply.

Terrific interactive showing the broad reach of these cuts. Baylor College of Medicine in TX stands to lose more ($57M) than Harvard Medical School ($34M). Vanderbilt University Medical Center & UT Southwestern Medical Center stand to lose more ($71M & $57M) than Sloan-Kettering in NY ($54M).

The Division of #ChildHealth #Research and #Policy (CHeRP) is now on BlueSky! Follow us to learn more about our recent work, guest speakers and published articles! For more info on our work, visit: www.populationmedicine.org/research/CHe...

(1/2) Reminder: Next month Professor Katherine Payne from the University of Manchester will present on generating economic evidence to understand the potential impact of pharmacogenetic testing #IHEA #healtheconomics #pharmacogenetics healtheconomics.org/event/econ-o...

(Your name here) gene therapy: new fund-raising gambit for family with rare disease www.statnews.com/2024/12/16/g...

(1/6) Attention Early Career Researchers (ECRs): We have slightly altered the application criteria for our ECR ‘Preprint Club’ series for 2025. #IHEA #healtheconomics #genomics #precisionmedicine

Calling all health economists! The Tufts-CEVR Cost-Effectiveness Analysis Paper of the Year Contest is back! Submit your paper on cost-effectiveness analysis for a chance to win $500. Deadline: January 31, 2024. Don't miss out! Learn more & apply: tinyurl.com/yskfm9us #HEOR #CEA

Re-sharing this growing list!

A mere starting point, we're sure. Please use, and add to. go.bsky.app/KuUsm35

Meet our team! @hadleyssmith.bsky.social & Samantha Pollard are the research and international collaboration conveners of the IHEA Economics of Genomics & Precision Medicine Special Interest Group (i.e., the Econ-Omics SIG). #healtheconomics #genomics #precisionmedicine

Regulatory Processes for Rare Disease Drugs in the United States and European Union: Flexibilities and Collaborative Opportunities - Editors: Jeffrey Kahn, Carson Smith, Tequam Worku, and Carolyn Shore | The National Academies Press nap.nationalacademies.org/catalog/2796...

Are you an undergraduate interested in exploring ethical issues in health and medicine? Learn more about our summer '25 internship experience in genomics & bioethics! Choose among 2 upcoming zoom info sessions, get your questions answered by the program faculty & coordinator. 🧵

In this seventh installment of the ELSI Abroad series, CERA spoke with Ilhak Lee, MD, PhD, and Hannah Kim, MD, PhD, about ELSI research in South Korea elsihub.org/news/elsi-ab...

New NASEM Report: Sustaining Community Engagement in Genomics Research: Proceedings of a Workshop. Division of Ethics Chief Sandra Soo-Jin Lee served as co-chair of the workshop committee. www.mhe.cuimc.columbia.edu/news/sustain...

📣 Today the World Health Organization's #Genomics Program launched its new principles for the ethical human genome data collection, access, use and sharing. 🌎🧬 Read more & access the full document here 👉 www.who.int/news/item/20... #WHO#globalhealth #data #equity #collaboration #research

An interesting new DCE led by Robin Forrest, currently a fellow @deptpopmed.bsky.social www.thelancet.com/journals/lan...

Untapped Potential? Representativeness in Pragmatic Clinical Trials | Research, Methods, Statistics - By Caleigh Propes, Kayla Mehl, & Stephanie R. Morain | JAMA jamanetwork.com/journals/jam...

Our November ELSI in Review explores the utility of obesity polygenic risk scores, ethics of ChatGPT use in healthcare, ELSI of gamete donation, and more.

Good to see that we're getting more people on here now. Feel like the next step is generating more content so I'm going to post a thread about my research for new followers and people I haven't spoken too in a while! So hi bluesky, I'm Stu and I'm a health economist 1/n

Here’s a starter pack of some ELSI researchers! Will update over time — let me know if I’ve missed you! go.bsky.app/CUh9PWa

👋 Just getting connected here! I made a starter pack of researchers who study patient-centered and economic outcomes of genomic and precision medicine. Hope to grow this list over time, so reach out if you’d like to be included! 🧬 go.bsky.app/7q8UwB2