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Sarah Walter

@sarahmwalter.bsky.social
656 followers 298 following 55 posts

Working to empower research participants and co-create research that involves their perspectives and priorities. Alzheimer’s, Dementia, Down Syndrome with Alzheimer’s, Clinical trials, Advocacy. PhD Candidate, University of Edinburgh

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Reposted by Sarah Walter
Jace D. Flatt, PhD, MPH (They/He) @jaceflatt.bsky.social · 20/03/2025
Current list of terminated grants by NIH. taggs.hhs.gov/Content/Data...
taggs.hhs.gov
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Meade Krosby @meadekrosby.bsky.social · 08/03/2025
Affected in any way by recent federal science cuts? Please fill out and share a new survey to track impacts.👇 I'm unaffiliated but can vouch this is being run by a group of alumni of the AAAS Science & Technology Policy Fellowship and USAID Science for Development Fellowship.
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Eric Topol @erictopol.bsky.social · 01/03/2025
Francis Collins, the NIH Director for 12 years, led the Human Genome Project and other NIH efforts for 32 years, resigned today. Key words from his resignation letter www.nytimes.com/2025/03/01/u...
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Sarah Walter @sarahmwalter.bsky.social · 01/03/2025
This is critical research. Cancelled.
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Dr. Donna Wilcock @wilcocklab.bsky.social · 08/02/2025
Please see a collective response from an esteemed group of leaders in the dementia field to the NYT article and book “doctored” by Charles Piller. www.nytimes.com/2025/01/24/o...
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Sarah Walter @sarahmwalter.bsky.social · 07/02/2025
A scientist and dear friend wrote this response to misleading accusations of fraud in #Alzheimers research. www.nytimes.com/2025/02/06/o...
nytimes.com
Opinion | The Price of Fraud in Alzheimer’s Research
Readers worry that fraud may tarnish the field and slow the race for a cure. Also: Charles Blow’s farewell; treatment for addiction; the Gulf of America; Socrates and Donald Trump.
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Sarah Walter @sarahmwalter.bsky.social · 06/02/2025
As a mom of a young teenage girl, I want to thank these researchers for this beautiful work! What a powerful example of good science and intentional co-production! #socialscience #inclusion #womenshealth
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Crystal M. Glover, Ph.D. @cgster.bsky.social · 05/02/2025
Y’all, @alzdemjournals.bsky.social Behavior & Socioeconomics of Aging (BSEA) has reached an important milestone ALREADY! 3 peer-reviewed research papers: PUBLISHED! Read and share: alz-journals.onlinelibrary.wiley.com/journal/2997...
alz-journals.onlinelibrary.wiley.com
Alzheimer's & Dementia: Behavior & Socioeconomics of Aging
Click on the title to browse this journal
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PxP (For Patients, By Patients) @pxphub.bsky.social · 04/02/2025
⭐Webinar reminder! Join us tomorrow, February 5th. Find out how our panelists have navigated working as part of a research team, including what supports and facilitators they have asked for or created for themselves. #PatientEngagement #PatientPartners #PPI #PxP25
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Sarah Walter @sarahmwalter.bsky.social · 04/02/2025
Really looking forward to this webinar on partnering with #Vietnamese communities - sign up here! Alz.org/research-webinars #dementia #research #participatoryresearch
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Sarah Walter @sarahmwalter.bsky.social · 17/01/2025
This is unacceptable, clear disparity in diagnosis which will impact these individuals and families in enormous ways!
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Jen Woodard, MD @jawoodardmd.bsky.social · 15/01/2025
UW Madison seeks a visionary and transformative leader for Division Chief, Geriatrics and Gerontology. This is an exceptional opportunity to expand research on aging, guide the professional development of faculty and shape the next gen of medical professionals. To apply: lnkd.in/gWp23jDN
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Louca-Mai Brady @louca-mai.bsky.social · 17/01/2025
UK #PublicInvolvement #PPI news: @nihr.bsky.social Centre for Engagement & Dissemination (formerly INVOLVE) to be hosted by @bmj.com group from 1/4. They will lead & coordinate 'Public Partnerships & Research Impact activities'. www.nihr.ac.uk/news/nihr-in... Will be watching with interest... #PPIE
nihr.ac.uk
NIHR to increase commitment to Public Partnerships and Research Impact with new Coordinating Centre contract
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Involve North East @involvene.bsky.social · 16/01/2025
It's so important to listen to patients! 👇 #PatientInvolvement #PatientEngagment #Listen
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Well Beings | Mental Health, Caregiving & Health Resources @wellbeingsorg.bsky.social · 08/01/2025
When speaking to (or about) someone living with a #mentalhealth condition, it’s best to use person-first language that focuses on the individual, not the illness. You can find a full list and a FREE DOWNLOAD wellbeings.org/LanguageGuide
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Dr. Lucky Tran @luckytran.com · 14/01/2025
All Los Angeles Public Library locations are providing free N95 masks. Libraries are essential!
N95 Masks are Available at all Los Angeles Public Library Locations
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Sarah Walter @sarahmwalter.bsky.social · 05/01/2025
So wonderful to have the evidence that both researchers and community members benefit when we partner! Important learning —> community members value quality of relationship and a focus on #prevention #dementia #ppi researchinvolvement.biomedcentral.com/articles/10....
researchinvolvement.biomedcentral.com
Engaging older adults in the process of aging research: a multimethod study evaluating the experience and efficacy of a citizen advisory group for a dementia risk reduction program - Research Involvem...
Background Collaborative research with end-users is an effective way to generate meaningful research applications and support greater impact on practice and knowledge exchange. To address these needs,...
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Louca-Mai Brady @louca-mai.bsky.social · 04/01/2025
Happy new year #PublicInvolvement people 🎊 This starter pack is growing growing fast & almost at capacity. So if you work in health & care research #PPI &/or #Coproduction & would like to be added let me know 👋. If you're on it already take another look 👀, as there may well be new people to follow
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Dementia Community @dementiacommunity.bsky.social · 01/01/2025
TIDE (Together In Dementia Everyday) has been awarded a grant by the Dementia Trust to begin some peer support groups for carers of people with young onset dementia (YOD) in conjunction with the Alzheimer's Society (@alzheimerssoc.bsky.social). Read More: buff.ly/3ZZa8gl
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Liesbeth Corens @onslies.bsky.social · 31/12/2024
31 December 1995. Still the perfect goodbye.
The final Calvin and Hobbes cartoon. The entire page is mostly white as they're in the winter snow. The pair is walking with a sledge, nicely duffled in in scarves, hats, gloves. Calvin delightedly exclaims 'wow, it really snowed las night! Isn't it wonderful?'. Hobbes follows up with 'Everything familiar has disappeared! The world looks brand-new!' -- A new year... a fresh, clean start!' adds Calvin. As they look over the landscape, Hobbes observes 'it's like having a big white sheet of paper to draw on!' -- 'A day full of possibilities!' Calvin affirms. They get ready on their sledge and Calvin tells his friend 'it's a magical world, Hobbes, ol' buddy... let's go exploring!', and the pair sledges off into the wintery landscape.
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Jason Hassenstab @ctrlab.org · 30/12/2024
Critical findings from my man @bryandjames.bsky.social at Rush Alzheimer's Disease Research Center. Social activities may delay dementia onset by 5 years. That delay could result in $500,000 savings in healthcare costs. #ENDALZ #Alzheimer's alz-journals.onlinelibrary.wiley.com/doi/10.1002/...
alz-journals.onlinelibrary.wiley.com
Late‐life social activity and subsequent risk of dementia and mild cognitive impairment
INTRODUCTION Social activity is associated with better cognitive health in old age. To better translate epidemiological research for public health communication, we estimated relations of levels of .....
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Sarah Walter @sarahmwalter.bsky.social · 28/12/2024
Fantastic paper- showing effectiveness of engaging with older adults to disseminate science!! Let’s go!!
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Prof Sam Illingworth @samillingworth.com · 24/12/2024
🎅📡 Track Santa this Christmas! The North American Aerospace Defense Command (NORAD)'s Santa Tracker uses radar, satellites & jets to monitor Santa's flight around the globe A fun way to explore tech & science this Christmas! Track Santa here: www.noradsanta.org #Christmas #Santa #SciComm 🧪
noradsanta.org
Official NORAD Tracks Santa
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Prof Sheena Cruickshank @sheencr.bsky.social · 20/12/2024
Great to hear of new discoveries and I hope the exhibition bolsters conservation efforts 🧪🌍
theguardian.com
Blob-headed fish and amphibious mouse among 27 new species found in ‘thrilling’ Peru expedition
Scientists surprised to find so many animals unknown to science in Alto Mayo, a well-populated region
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Sarah Walter @sarahmwalter.bsky.social · 16/12/2024
#researchadvent for today - excited to be part of the team planning #publicengagement with www.Aptwebstudy.org anyone over 50 is welcome to join our online Webstudy #prevention #alzheimers #endalz
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Sarah Walter @sarahmwalter.bsky.social · 16/12/2024
In three years I’ll look back and think .. how blissfully happy I am working hard and loving my sarcastic brilliant kids.
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Sarah Walter @sarahmwalter.bsky.social · 12/12/2024
I have so much appreciation for the people with lived experience of dementia that have been part of my co-design team. They keep me focused on what really matters, and (bonus) they give me so much grace, support and love! #gratitude #endalz #researchadvent
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Sarah Walter @sarahmwalter.bsky.social · 12/12/2024
Today’ #researchadvent - I’m excited about my PHD project! ethics submitted today!! Topic is research ambassadors for dementia research. #researchadvent #uofedinburgh #pgrstudent
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Lisi Flores-Aguilar @lisi-fa.bsky.social · 11/12/2024
🎉A bit late to the party, but happy to be joining this community! 💫The Down syndrome and Alzheimer’s disease PIA has put together a webinar on cerebrovascular pathology in DS and AD. Please join us on Zoom on Friday 13th, 10:30 am PST, 12:30 CT USA. ✏️Register here: alz-org.zoom.us/webinar/regi...
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Dr Phoebe Averill @phoebeaverill.bsky.social · 11/12/2024
We need help from adults aged 40+ with Down's syndrome and family/carers to make a film together to train health & social care staff. We want you to share your experiences of falling & ideas about what helps you to move safely, to help staff to support you. Please get in touch! 📍London, UK
The poster is for adults with Down's syndrome aged 40 years old or above, who live near London. It invites you and your family or carers to get involved with a project about falling over and moving around safely. If you get involved, we will have some meetings together. We want to hear your stories about falling. We also want to hear what helps you to move around safely. We will make a film together to train healthcare staff, like doctors or nurses. You and your family or carers will be paid £25.00 per hour for helping. Please contact Phoebe Averill on 020 7594 9038 to talk about it.
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Sarah Walter @sarahmwalter.bsky.social · 10/12/2024
This morning one of my participant advisors called just to say “hi” and gave me a few words of encouragement and wisdom. And just a few hours later I got the go-ahead for a new research proposal! Participant support gives you power! #endalz #participantfeedback #trialdesign
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Jace D. Flatt, PhD, MPH (They/He) @jaceflatt.bsky.social · 06/12/2024
The first state-funded study of LGBTQIA+ midlife & older adults in Californian almost complete. It’s a 2 part study on LGBTQIA+ aging that includes an online survey data from a series of focus groups with some of the hardest to reach LGBTQIA+ midlife & older adults. sfbaytimes.com/results-now-...
sfbaytimes.com
Results Now Available From Groundbreaking Survey of LGBTQIA+ Midlife and Older Adults in California - San Francisco Bay Times
By Marcy Adelman– The first state-funded study of LGBTQIA+ midlife and older adults in Californian is nearing completion. It is a two-part study on LGBTQIA+ aging that includes both an online survey a...
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Nicholas (@ultimape) Perry @ultimape.bsky.wovensoup.com · 26/11/2024
"It's a lot harder than taking even very demanding coures. What makes it difficult is that research is immersion in the unknown. We just don't know what we're doing. We can't be sure whether we're asking the right questions or doing the right experiment until we get the answer or the result."
journals.biologists.com
The importance of stupidity in scientific research
I recently saw an old friend for the first time in many years. We had been Ph.D. students at the same time, both studying science, although in different areas. She later dropped out of graduate school...
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Sarah Walter @sarahmwalter.bsky.social · 04/12/2024
Fantastic tips on co-analysis with lived experience experts in dementia research - thanks for sharing! #inclusiveresearch #coproduction #dementia
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ChrisBintener @chrisbintener.bsky.social · 03/12/2024
This article with Wendy Mitchell is essential for anyone communicating about Alzheimer's & dementia: "Don't call us sufferers – it makes us lose all hope, says bestselling author who is battling dementia." Wendy passed away this year, but her words remain relevant www.dailymail.co.uk/health/artic...
dailymail.co.uk
Bestselling author says don't call us dementia patients sufferers
British writer Wendy Mitchell, 62, (pictured)who was diagnosed with early-onset Alzheimer's four years ago, said the language used by doctors can 'make or break' how patients cope.
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Dementia Researcher @dementiaresearcher.bsky.social · 03/12/2024
Online peer support for individuals affected by dementia - with speaker Dr Catherine Talbot from @bournemouthuni.bsky.social 📅 Wednesday 11 December ⏲️ 11:30-12:30 GMT / 12:30-13:30 CET 📍 MS Teams From @arc-em.bsky.social www.dementiaresearcher.nihr.ac.uk/event/online...
dementiaresearcher.nihr.ac.uk
Online peer support for individuals affected by dementia
University of Nottingham welcomes Dr Catherine Talbot from Bournemouth University to present on 'Online peer support for individuals affected by dementia'.
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Amit Das @amit-das.bsky.social · 26/11/2024
Being a sibling of someone with Down syndrome and working on ending Ds-associated Alzheimer's disease means walking a fine line between my role as brother and my role as professional. Read a perspective I wrote about this here: bit.ly/4ePeqN1 #disability #alzheimers #downsyndrome
bit.ly
His Amazing Self: a brother’s reflection on Down syndrome-associated Alzheimer’s Disease - LuMind IDSC Foundation
A personal reflection about an amazing brother with Down syndrome and the realities of Down syndrome-associated Alzheimer's Disease.
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Dr Nagina Khan @drkhan-do.bsky.social · 01/12/2024
📢 New paper 👇🏼 This research is about diversity, community engagement, & co-design in health & social care research, focusing on the importance of including individuals from all backgrounds in the research process. 1st of Dec is off to a good start 🥰 Link: bmjleader.bmj.com/content/earl...
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Sarah Walter @sarahmwalter.bsky.social · 01/12/2024
Great summary- #Coproduction recommendations- people want to see the impact their voice has had on research!
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Sarah Walter @sarahmwalter.bsky.social · 30/11/2024
This is excellent. Parent perspective on recent NDSS adult conference for people with #downsyndrome - advocacy can fight diagnostic overshadowing “oh that’s just the #Alzheimers” everyone deserves the best medical care! #healthequity #downsyndrome #clinicaltrials
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Lawrence (Larry) Mróz @drmroz.bsky.social · 30/11/2024
Prioritizing Knowledge User Engagement: Engaging Patients and the Public in Creating Enduring Musculoskeletal Rehabilitation Research | Journal of Orthopaedic & Sports Physical Therapy www.jospt.org/doi/abs/10.2...
jospt.org
Prioritizing Knowledge User Engagement: Engaging Patients and the Public in Creating Enduring Musculoskeletal Rehabilitation Research | Journal of Orthopaedic & Sports Physical Therapy
SYNOPSIS: To improve the potential for sustained success when implementing injury prevention programs, researchers must focus on patient and public involvement and engagement. Creating lasting equitable relationships between researchers and knowledge users (ie, improving patient and public involvement and engagement) takes time and purposeful investment. Researchers must prioritize, embrace, and integrate patient and public involvement and engagement as a dynamic and continuous social process, unique to each community setting; it is not a one-off checkbox. Recognizing that knowledge users across disciplines and settings are not passive scientific consumers, but active knowledge creators, begins the process of developing equitable partnerships. In this editorial, we highlight the importance of (1) equity in sport and orthopaedic medicine, (2) prioritizing patient and public involvement and engagement at all stages of the research process, and (3) focusing on a knowledge user-centered perspective when designing, analyzing, implementing, and subsequently evaluating musculoskeletal injury prevention programs. J Orthop Sports Phys Ther 2024;54(12):1-5. doi:10.2519/jospt.2024.12668
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April Sparkles 💛🍁 @aprilsparkles.bsky.social · 29/11/2024
#DownSyndrome #HolidayMarketPlace #BlackFriday 💛
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Sarah Walter @sarahmwalter.bsky.social · 28/11/2024
thanksgiving inspiration - an article on pioneering women scientists, including one using participant- centered practices! #healthequity #agingscience
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Sarah Walter @sarahmwalter.bsky.social · 27/11/2024
Fanstic quick byte on research led by my friend amd colleague Mouna Sawan on a tool to help medication management for people with #dementia and #caregivers open.spotify.com/episode/3ayj...
open.spotify.com
Dr Mouna Sawan on simplifying hospital discharge notes for dementia patients
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Nathan Davies @profnathandavies.bsky.social · 25/11/2024
Very excited to see our Doctoral Training Centre open for applications for 6 PhD students starting next October. Lots of amazing projects to pick from including hospital at home, integrated health & social care, Parkinson’s #dementia, diagnostic inequalities. Do reach out to the named supervisors.
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Dementia Researcher @dementiaresearcher.bsky.social · 23/11/2024
Are you a person with dementia or a carer? Help improve communication in research! @sgriffiths-6.bsky.social is creating a video to empower voices in PPIE meetings. Join the workshops (paid opportunity) & share your ideas. Open to diverse backgrounds.
An image promoting a project by the NIHR School for Primary Care Research and UCL. The project seeks to improve communication between people with dementia and researchers during Patient and Public Involvement and Engagement (PPIE) work.

Headline:
"People with dementia and researchers working in partnership. How can we improve communication between them?"

About Us:
The project involves researchers from UCL, individuals with lived experience of dementia, and a dementia charity co-director. The team needs people with dementia and carers to participate.

What is the project about?

People with dementia often face communication challenges, making it difficult to participate in PPIE work.
PPIE involves partnering with researchers to design and conduct research, distinct from being research participants.
Goal:
Create a video to empower people with dementia to share their input in PPIE meetings.

Who are we looking for?

Six people with dementia and six carers with PPIE experience.
Individuals from underrepresented groups in research, including those from minority ethnic backgrounds, LGBTQ+ communities, and those facing financial hardship.
What will it involve?

Workshops: Three 2-hour sessions between January and September 2025 (online or in-person).
Content Creation: Ideas gathered in the workshops will inform a professional video on inclusive communication for PPIE.
Payment: £25 per hour, plus a £5 remote working fee per meeting, and support for travel and accommodation.
Contact:
If interested, contact Sarah Griffiths for a chat:
Email: s.a.griffiths@ucl.ac.uk | Phone: 020 3108 6699

The image features a group of diverse people in a casual discussion, representing inclusivity.
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Jay Lusk, MD, MBA @jayblusk.bsky.social · 23/11/2024
New Lancet paper on disparities in life expectancy since 2000. In the “ten americas”, precipitous decline in life expectancy among “America 10” (1.3 million American Indian/Alaska Native residents in the west) stands out. Urgent need for policy interventions #MedSky www.thelancet.com/journals/lan...
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Rachel Buckley, PhD @bucklr01.bsky.social · 23/11/2024
How the #NIHDP2Innovator award was born. I love this award. It's given me so much freedom to research the X chromosome. I highly recommend considering applying if you are eligible commonfund.nih.gov/newinnovator
commonfund.nih.gov
NIH Director's New Innovator Award | NIH Common FundLock
Program SnapshotPart of the High-Risk, High-Reward Research program, the award supports early career investigators of exceptional creativity who propose bold and highly innovative research projects wi...
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Dementia Researcher @dementiaresearcher.bsky.social · 22/11/2024
Alzheimer's Society is looking for a National Influencing Manager (Public Affairs), leading a team to help bring about change. @alzheimerssoc.bsky.social Closing date: 28th November. www.dementiaresearcher.nihr.ac.uk/job/national...
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Elizabeth Head, Ph.D. @elizabethhead.bsky.social · 23/11/2024
Super excited about this new paper with Vivek Swarup and Kim Green at UCI (hope they both join Bluesky!) - Here we present a spatial transcriptomic (ST) and single-nucleus transcriptomic survey of late-onset sporadic AD and AD in Down syndrome (DSAD)! www.nature.com/articles/s41...
nature.com
Spatial and single-nucleus transcriptomic analysis of genetic and sporadic forms of Alzheimer’s disease - Nature Genetics
Spatial and single-nucleus analyses in human postmortem Alzheimer’s disease (AD) brain tissues at early and late stages from individuals with and without Down syndrome, as well as in AD mouse models, ...
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