Latest posts tagged with #registries on Bluesky
Sign up to attend the @mdukcharity.bsky.social info day in Birmingham below, and learn about how our #patient #registries can support patients, families, clinicians and researchers to advance research and care for rare #neuromuscular conditions in the UK and beyond! 🧬🌐🔬🤝🧡
#Development #Introductions
Scoped registries for custom elements · How independent scopes resolve name clashes ilo.im/16b8np by Jayson Chen and Patrick Brosset
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#Registries #WebComponents #Chrome #Edge #Browser #WebDev #Frontend #HTML #JavaScript
The Underfunded Gatekeepers: How Open-Source Registries Became Critical Infrastructure Without the Budget to Match Open-source package registries like npm and PyPI distribute billions of software p...
#CybersecurityUpdate #npm #open-source #funding […]
[Original post on webpronews.com]
Catch up on the Evidence Insights, "Turning data into evidence: fit-for-purpose RWD in practice."
This feature explores how #claims, #EHRs, #registries, #genomics, and patient-generated data can be combined to deliver reliable #RealWorldEvidence.
Explore here: becarispublishing.com/spotlights/t...
🔄 Updated: Who Pays the Bill for Abusive Domains?
www.diggingdns.com/modules/deep/who-pays-th...
#dns #dnsabuse #economics #fraud #chargebacks #registrars #registries #deep
✨ New: Who Pays the Bill for Abusive Domains?
www.diggingdns.com/modules/deep/who-pays-th...
#dns #dnsabuse #economics #fraud #chargebacks #registrars #registries #deep
🚨 80% of the poorest rural households in low-income countries lack access to #SocialProtection. Linking farmer and social #registries can help close this gap. 🤝
fao.org is eager to collaborate with countries and partners to scale up this solution. Will you join us? 👇
📧 It´s here! The latest from @fao.org on #SocialProtection!
📢Catch up on our news👉 bit.ly/3GkV9HY
🔸 Q&A with government representatives on farmer & social #registries
🔸 Why link social protection, livelihoods and environment?
🔸 🆕 guidance on #NDC by the nopovertyhunger.bsky.social
…and more!
If you or a loved one lives with #epidermolysisbullosa in Ireland, joining the #EBRegistry is a powerful way to support #EBresearch and advance #EBcare.
Learn more👉 www.debra.ie/eb-research/...
#HealthReserchMatters #EB #Registries
✨ New: The Economics of a Domain Name
www.diggingdns.com/modules/deep/economics-d...
#dns #networking #basics #economics #domains #registrars #registries
Improving #patientoutcomes and advancing #endocrine #research through real-world #data #registries
This ensures that decisions are informed by real-world #evidence, leading to more precise #diagnoses, enhanced #therapies, and better #health #management #strategies.
ow.ly/xUoM50VRrkl
#SfE
Improving #patientoutcomes and advancing #endocrine #research through real-world #data #registries
This ensures that decisions are informed by real-world #evidence, leading to more precise #diagnoses, enhanced #therapies, and better #health #management #strategies.
ow.ly/xUoM50VRrkl
#SfE
📣 Join us for the DPC Preservation Registries Special Interest Group session!
📅 When: Thursday, June 5th
🔓 Open to: All interested in format & software registries
💡 Topic: Monthly discussion on preservation registries
Details & joining information […]
[Original post on digipres.club]
Research Article
Clinical Expression of Radiographic Axial Spondyloarthritis and Its Association With HLA-B27 in European and Ibero-American Populations
📖 www.jrheum.org/cgi/content/...
@hureinasofia.bsky.social @uco.es
#registries #rheumaticdiseases #spondyloarthritis
I cited your explainer on #autism in my post yesterday,
@alisonescalantemd.bsky.social, on RFK Jr's dangerous ideas about #registries and the slippery slope towards #eugenics, given how unethical and clueless he is www.forbes.com/sites/judyst...
My latest: on RFK Jr's #autism, #registries, and the slippery slope toward #eugenics.
www.forbes.com/sites/judyst... As the child of #Holocaust survivors, I've seen this playbook before.
AMP just published!
"How to Unleash the Potential of the Portuguese Registry of Intensive Care Medicine?"
Full paper here:
www.actamedicaportuguesa.com/revista/inde...
#criticalcare #intensivecareunits #Portugal #registries #actamedicaportuguesa
We have a paper cited in this @actaorthopaedica.bsky.social Guest Editorial on The power of #registries and #RSA #CharnleyElite
actaorthop.org/actao/articl...
Our #SMA Data Coordinator Aleks (and our mascot Reggie 🦁) are promoting our #NMD #Patient #Registries at the @mdukcharity.bsky.social Awareness Day in Birmingham today.
Come for a chat, or learn more about how we support #MuscularDystrophy communities online: linktr.ee/jwmdrcregistries
🚀 🚀 Tampere, here we come! On March 21-22, we’re bringing together top experts to explore neurological care registries, research, and shared decision-making 🧠💡 #healthcareprofessional #RWE #neurology #psychiatry #nursing #drugdiscovery #treatmentmonitoring #registries
sites.uef.fi/neurologiste...
❄️That’s a wrap on the VASCERN Vascular Anomalies Working Group winter meeting!
Over two days, experts & patient advocates worked on #guidelines, #registries & patient pathways to improve care for vascular anomalies.
🎥Celebrating with the traditional boomerang!
#RareDiseases
The image is a screenshot of a zoom session with a powerpoint slide on the left and participants on the right hand side.
The RI Education Hub continued today with two excellent presentations on Patient Registries from Russell Wheeler and Todd Durham @fightblindness.bsky.social. Thanks to our speakers and participants for their participation and engagement #IRD #Genetics #GeneticTesting #Registries #ClinicalTrials
Research Article
Patient Profiles in Randomized Controlled Trials Versus a Real-World Study in Psoriatic Arthritis: Scoping Review and Metaanalysis
📖 www.jrheum.org/cgi/content/...
#psoriaticarthritis #randomizedcontrolledtrial #registries
Most #RareDisease #registries require a confirmed Dx for inclusion. This is important for accurate calc of risks & outcomes, but accuracy is also threatened when people who remain undiagnosed are missed. This can perpetuate inequities: “If someone’s not counted, they don’t count.”
Giens Workshops 2024
Health data: Regionalised access is a priority challenge for building a secure, transparent and innovative national health data repository
www.em-consulte.com/article/1713...
#HealthData #EHealth #Strategy #Funding #HealthDataWarehouse #SNDS #Cohorts #Registries
Interesting use of registry/biobank methods for personalized precision medicine. #MedicalInformatics #HealthInformatics #Epidemiology #Registries #Biobanks
