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hadleyssmith.bsky.social
Hadley Stevens Smith
@hadleyssmith.bsky.social
450 followers 420 following 18 posts
Health economist & ELSI scholar researching pediatric genomic medicine. Assistant Professor of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute. @cherpdpm.bsky.social www.hadleysmith.com
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Reposted by Hadley Stevens Smith
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 14d
(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...
Advancing Health Equity in Genomic Medicine through Distributional Cost-Effectiveness Analysis (DCEA) – International Health Economics Association
healtheconomics.org
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Reposted by Hadley Stevens Smith
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 15d
The recording from this event is now available! #mendelianrandomisation #mendelianrandomization #genomics #healtheconomics #costeffectiveness #CEA

www.youtube.com/watch?v=ui0n...
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Reposted by Hadley Stevens Smith
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · Aug 24
#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
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Reposted by Hadley Stevens Smith
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · Aug 26
#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
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Reposted by Hadley Stevens Smith
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · Aug 14
(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...
Applying Mendelian Randomization in Health Economics – Bridging Genomics and Cost-Effectiveness – International Health Economics Association
healtheconomics.org
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Aug 19
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...
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Aug 18
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...
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...
jamanetwork.com
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Aug 7
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!
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · Aug 4
🔔 FINAL EXTENSION: The #IHEA Econ-Omics SIG global survey on integrating #healtheconomics into #genomicmedicine is still open and the deadline has been extended to Friday 15 August!

We’d love your input! No economics background needed.

🕒 ~15 mins
🔗 q.surveys.unimelb.edu.au/jfe/form/SV_...
Qualtrics Survey | Qualtrics Experience Management
The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.
q.surveys.unimelb.edu.au
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Aug 6
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...
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...
www.gimopen.org
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Reposted by Hadley Stevens Smith
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · Jul 3
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
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Jul 2
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
theacmg.bsky.social
ACMG @theacmg.bsky.social · Jul 2
In response to the #ACHDNC dissolution, ACMG is organizing a new advisory framework for #newbornscreening, starting with a virtual stakeholder roundtable this summer. Outreach to key groups begins soon. More to come. bit.ly/3IngaCi #MedicalGenetics #RUSP #PublicHealth
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Reposted by Hadley Stevens Smith
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · Jun 27
(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-...
Early Career Researcher (ECR) Journal Club – International Health Economics Association
healtheconomics.org
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Jun 24
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!
sallysansom.bsky.social
Sally Sansom @sallysansom.bsky.social · Jun 23
(1/5) I recently returned from a 1-month research visit at the @deptpopmed.bsky.social within @harvardmed.bsky.social‬, generously hosted by @hadleyssmith.bsky.social and her team. This visit was an exciting opportunity to build on our collaboration and to advance core components of my PhD.
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Jun 1
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:/...
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Reposted by Hadley Stevens Smith
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · May 14
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!
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Reposted by Hadley Stevens Smith
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · May 14
#Conference #ISPORAnnual #HEOR #Genomics #rarediseases #patient
sallysansom.bsky.social
Sally Sansom @sallysansom.bsky.social · Apr 28
Excited to share that I’ll be presenting my PhD work at ISPOR in Montreal! My poster on patient- and carer-reported outcomes from #genomesequencing is in Poster Session 1 from 10:30am-1:30pm 14 May (discussion period: 12:30-1:30pm). Hope to see you there! #ISPORAnnual #HEOR #RareDiseases #Genomics
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Reposted by Hadley Stevens Smith
elsihub.bsky.social
ELSIhub | CERA @elsihub.bsky.social · Apr 18
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
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Reposted by Hadley Stevens Smith
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · Mar 27
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
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Reposted by Hadley Stevens Smith
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · Mar 26
@jbuchanan-ox.bsky.social @iliasgoranitis.bsky.social @hadleyssmith.bsky.social @sallysansom.bsky.social
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Mar 23
Looking forward to joining this panel at @asnpls.bsky.social to discuss findings from clinical and survey research studies in pediatric genomic medicine.
mattmotta.bsky.social
Matt Motta @mattmotta.bsky.social · Mar 22
Mark your calendars #MPSA2025!

APLS' "conference-within-a-conference" is on Friday 4/4. We've got wine, snacks, and lots of great discussion about emerging issues in politics & the life sciences.

Keynote: Dr. Jennifer Hochshield

Featuring talks from . . . 🧵

CC: @melissabaker.bsky.social
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Reposted by Hadley Stevens Smith
ihea-econ-omics.bsky.social
IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · Mar 18
(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
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Reposted by Hadley Stevens Smith
statnews.com
STAT @statnews.com · Mar 18
The longtime director of the National Human Genome Research Institute is stepping down, as the larger NIH braces for more changes.
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.
buff.ly
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Mar 17
Grateful for the community and continuous career development opportunities that @smdm.bsky.social provides
smdm.bsky.social
Society for Medical Decision Making (SMDM) @smdm.bsky.social · Mar 17
🏆 Awardee Spotlight: Hadley! 🏆

🧠 Area of Expertise: Applied Health Economics & Preference Research
🔬 Research Focus: Genomic Medicine

Hadley received the 2023 Young Scholar Award in Health Policy in Honor of Sandy Schwartz.

👏 Congratulations, @hadleyssmith.bsky.social!
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hadleyssmith.bsky.social
Hadley Stevens Smith @hadleyssmith.bsky.social · Mar 12
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.
cherpdpm.bsky.social
The Division of Child Health Research and Policy @cherpdpm.bsky.social · Mar 7
New Publication! CHeRP faculty Hadley Stevens Smith, staff Maddie Hickingbotham and former fellow Taylor Montgomery's paper Preferences for #genetictesting among #populations #underrepresented in #genomic #research: a systematic review is featured in Eur J Hum Genet!

Read More Here: buff.ly/HOrJytm
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Reposted by Hadley Stevens Smith
genandgenes.bsky.social
Gen Wojcik @genandgenes.bsky.social · Feb 24
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.
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"
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