Hadley Stevens Smith

www.nature.com/articles/s41...

🔥🔥🔥 Is genomics value for money??? 🧬💰

👉 How do we define it?
👉 Measure it?
👉 And deliver it?

rdcu.be/eR243

@iliasgoranitis.bsky.social @stephaniebest.bsky.social @hadleyssmith.bsky.social @rich-genomics.bsky.social @jbuchanan-ox.bsky.social @rdexeter.bsky.social

HERC Webinar: Hadley Stevens Smith - From Crib to Clinic: The Economic and Ethical Trade-offs of Genomic Sequencing in Newborn Screening and Diagnosis Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, online surveys is used by over 300 different organisations in the UK...

UPCOMING WEBINAR

From Crib to Clinic: The Economic and Ethical Trade-offs of Genomic Sequencing in Newborn Screening and Diagnosis

Dr @hadleyssmith.bsky.social

Tues 21 Oct 10:30 h UK BST onsite/online

Free event registration app.onlinesurveys.jisc.ac.uk/s/oxford/her...

@oxpop.bsky.social

(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...

Facing the Next Generation of US Newborn Screening This Viewpoint discusses the critical role of the Advisory Committee on Heritable Disorders in Newborns and Children and the importance of continued national guidance to the future of US newborn scree...

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!

When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research Genetic results are important for both patients and their biological relatives. However, cascade screening (CS) uptake is low, especially when testing occurs through research programs and not clinical...

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

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

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.

Screenshot of website from January 19th, 2025 of meeting summary. Event details say "The National Human Genome Research Institute (NHGRI) will host a virtual workshop entitled “Future Directions in Genomics and Health Equity Research” on April 6-7. The goal of the workshop is to identify research gaps and opportunities that will help to decrease health disparities and improve health equity in genomics. The workshop will emphasize the scientific value of diversity and inclusion as well as identify and prioritize future research needs in genomics to advance health equity. It will also explore best practices for making genomic data, technology and genomically informed healthcare ethical, representative, accessible and beneficial to all."

Screenshot of the same URL today (February 23rd, 2025). It simply says "404 - Page Not Found" and "The link you followed or typed is either incomplete, outdated or we have made a mistake! Please search above or see these helpful links instead"

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...

Thanks Kate! You’re in!