LinkedIn
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Excited to share this work which extends the Template for Intervention Description and Replication (TIDieR) to include pediatric-specific considerations: lnkd.in/gzFq_P52
Wonderful leadership by @martinoffringa.bsky.social!
#ClinicalTrials #ReportingGuideline #Pediatrics #ChildHealth
17.10.2025 22:17 β π 1 π 0 π¬ 0 π 0
Introductory online course β Knowledge Synthesis for Knowledge Users.
Learn from KS experts!
January to April, 2026
Scan the QR code to find out more, or visit (link to course page).
Delivered by the Knowledge Translation Program.
Image of QR code β green on white.
Logos for University of Toronto, Knowledge Translation Program, St. Michaelβs Hospital, Unity Health Toronto
Image of a person in a green shirt, holding a blue lightbulb in each hand.
Do you want to learn more about #KnowledgeSynthesis from the experts? By the end of our online course, "Intro to KS for Knowledge Users", you'll have a protocol ready for registration.
Apply & find out more here: bit.ly/42AoohE
@cathsmstratton.bsky.social @andreatricco.bsky.social
17.09.2025 17:53 β π 5 π 5 π¬ 0 π 1
SPOR Evidence Alliance July 2025 newsletter.
Check out our July 2025 e-newsletter for the latest SPOR Evidence Alliance updates, including patient-led research spotlights, publications, and engagement opportunities!
π© Read it here: mailchi.mp/smh/spor-evi...
#PatientOrientedResearch #PatientEngagement #KnowledgeMobilization
31.07.2025 23:59 β π 7 π 5 π¬ 1 π 0
We're thrilled to share that KTP grad student @cathsmstratton.bsky.social & scientists Drs @andreatricco.bsky.social and Jennifer Watt were awarded funding for their projects thru the Canadian Institutes of Health Research Spring Project grant competition!
Congratulations to all of the grantees! π
24.07.2025 19:55 β π 7 π 3 π¬ 0 π 0
Promotional graphic for the SPOR Evidence Alliance May 2025 newsletter.
Check out our May 2025 e-newsletter for the latest SPOR Evidence Alliance updates, including patient-led research spotlights, publications, and engagement opportunities!
π© Read it here: mailchi.mp/smh/spor-evi...
#PatientOrientedResearch #PatientEngagement #KnowledgeMobilization
30.05.2025 17:01 β π 4 π 3 π¬ 1 π 0
Connaught PhDs for Public Impact Fellows β Centre for Graduate Professional Development
(2/2)
PhDs for Public Impact fellows focus on engaging the public through their scholarly work. See the full group of 2025-2026 fellows at the link below.
Congratulations again to Catherine, and all of the new cohort!
www.cgpd.utoronto.ca/public-schol...
@sporalliance.bsky.social
27.05.2025 19:13 β π 3 π 2 π¬ 0 π 0
Thank you, @andreatricco.bsky.social!!
28.05.2025 01:05 β π 4 π 0 π¬ 0 π 0
(1/2)
Congratulations to KT Program grad student @cathsmstratton.bsky.social on being awarded aΒ Connaught PhDs for Public Impact Fellowship from the Centre for Graduate Professional Development at the School of Graduate Studies, @uoft.bsky.social!
@andreatricco.bsky.social
27.05.2025 19:13 β π 5 π 4 π¬ 2 π 0
Join RareKids-CAN in acknowledging World Moyamoya Day - a day dedicated to raising awareness and knowledge about moyamoya, a rare and progressive condition affecting the arteries in the brain.
06.05.2025 20:06 β π 2 π 1 π¬ 1 π 0
Open Science: What do patients or people with lived experience think?
My name is Laurie Proulx and I have lived with a chronic condition for most of my life. For the last 15 years, I have been active as a patient partner in research. On March 21, 2025, I am presenting t...
I am presenting at an Open Science event on March 21st & would like to get the patient community involved & influencing how I present the patient perspective. If you have 5 minutes, please consider completing this survey to share your feedback: docs.google.com/forms/d/e/1F... Many thanks!
13.03.2025 15:08 β π 12 π 11 π¬ 1 π 1
Barriers and facilitators to designing, maintaining, and... : JBI Evidence Synthesis
ases and rare disease patient registries.
Introduction:
Rare disease patient registries are vital to improving the understanding of the natural histories and predictors of outcomes of rare diseases...
Resharing on Bluesky now that itβs officially out! Our protocol for a scoping review examining barriers & facilitators involved in #RareDisease registry development.
journals.lww.com/jbisrir/abst...
@andreatricco.bsky.social @maureenchats.bsky.social @sporalliance.bsky.social @ktprogram.bsky.social
14.03.2025 03:38 β π 10 π 4 π¬ 0 π 0
Itβs #RareDiseaseDay! With ~1 in 12 affected, RDs represent a significant burden for patients, families, & systems. The RD diagnostic odyssey is a call for improved awareness. The fact that still, only 5% of RDs have a therapy is a sobering reminder of the work we have to do. #RareDiseaseIsNotRare
01.03.2025 02:10 β π 2 π 0 π¬ 0 π 0
The @moyamoyafoundation.bsky.social is gathering input from #moyamoya patients on what theyβd like to hear about at upcoming educational events. Please follow this link: docs.google.com/forms/d/1wxF....
Responses are de-identified and are not part of a research project.
26.02.2025 00:42 β π 3 π 1 π¬ 0 π 0
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: βIf someoneβs not counted, they donβt count.β
06.02.2025 01:12 β π 4 π 0 π¬ 0 π 0
The #RareDisease #DiagnosticOdyssey is a glaring example of health inequity. A Canadian Organization of Rare Disorders survey found pts saw 5.9 clinicians & received 3.2 misdiagnoses over 3.7 years before receiving an accurate Dx. RD awareness is crucial. #RareDiseaseIsNotRare #RareDiseaseTruth
04.02.2025 01:05 β π 5 π 2 π¬ 0 π 0
Itβs #RareDiseaseMonth! While there is no official definition, #RareDisease (RD) generally refers to conditions affecting <1 in 2k people. There are an estimated 10k RDs. Despite each RD being uncommon, 1 in 12 Canadians is affected by RD. #RareDiseaseIsNotRare #RareDiseaseTruth
03.02.2025 00:31 β π 6 π 0 π¬ 0 π 0
A big step forward! While the roll out of the National Strategy for Drugs for #RareDiseases has been slow with a series of agreements with provinces, this investment mitigates existing disparities. We must continue advocating for the inclusion of other drugs & sustainable support
27.01.2025 01:34 β π 7 π 1 π¬ 0 π 0
Member spotlight graphic for Amanda Doherty-Kirby, Patient and Public Partner.
Member spotlight! Amanda Doherty-Kirby is a valued patient partner of the SPOR Evidence Alliance, and has contributed to many knowledge synthesis projects.
Check out her spotlight in our December 2024 newsletter: shorturl.at/LG45U
We are grateful for her partnership!
24.01.2025 22:00 β π 10 π 5 π¬ 1 π 0
Sharing a new protocol publication regarding #MetaAnalysis in the context of #LivingSystematicReviews, led by my fellow lab member:
journals.lww.com/jbisrir/fullteβ¦. Well done, Menelaos!
@andreatricco.bsky.social
24.01.2025 00:06 β π 5 π 2 π¬ 0 π 0
What a year! Hereβs to continued success in 2025!
01.01.2025 04:40 β π 1 π 0 π¬ 1 π 0
a black background with the words happy new year written in white
Alt: a black background with the words happy new year written in white
#HappyNewYear, everyone!
May each day bring comfort, fresh opportunities, and moments of happiness. Hereβs to embracing new challenges and celebrating every win as we step into 2025. #NYE #NYE2025 #HappyNewYear2025
01.01.2025 04:18 β π 3 π 0 π¬ 0 π 0
Table set for Christmas dinner with red and gold Christmas crackers
Wishing everyone a wonderful holiday season that is restorative and fulfilling #MerryChristmas #HappyHolidays
26.12.2024 04:01 β π 5 π 0 π¬ 0 π 0
βMoyamoya Research Opportunityβ
Image: Help move forAI powered moyamoya research (infographic with a brain held in a blue hand)
Study: Understanding large language model (LLM) performance on questions about moyamoya
Principal investigator: Dr. Alfred See, Boaton Childrenβs Hospital
Description:
Little is known about LLM performance in scenarios resembling its anticipated everyday clinical usage. Our aim is to better understand the reliability and limitations of generative AI in guiding patients and patient families through neurological disorders.
Your insights are vital to advancing how artificial intelligence plays a role in peopleβs understanding of moyamoya. Together, we can explore and refine the role of AI in providing accurate and safe data on neurosurgical conditions.
Eligibility:
Anyone who shows an interest in moyamoya or visits the Moyamoya Foundation website and elects to take the survey.
Survey link:
https://redcap.tch.harvard.edu/redcap_edc/surveys/?s=MPTE4AX39LJKFW8W
If you are interested in #moyamoya and #LargeLanguageModels, please consider completing this study survey from Boston Childrenβs Hospital. Eligible for patients, caregivers, advocates, clinicians, and researchers! #RareDisease #Neurosurgery #Neurology
Link: redcap.tch.harvard.edu/redcap_edc/s...
17.12.2024 02:35 β π 5 π 4 π¬ 0 π 0
@moyamoyafoundation.bsky.social is now on Bluesky!! Follow for educational information and updates on foundation events and initiatives! #Moyamoya #RareDisease #Neurology #Neurosurgery
23.11.2024 20:40 β π 7 π 1 π¬ 0 π 0
The Wicked Movie might be my Eras Tour π©·ππ©·ππ©·ππ©· #TheatreKid
23.11.2024 03:45 β π 2 π 0 π¬ 0 π 0
Thank you!!
21.11.2024 22:28 β π 1 π 0 π¬ 0 π 0
Hello Bluesky crowd! Iβm new here and would love to connect with people interested in #Epidemiology #RareDisease #PatientAdvocacy#PatientEngagement #GradSchool #Disability #ChronicIllness #HealthResearch. Iβm an Epidemiology PhD student and patient advocate in Toronto. Looking forward to connecting!
14.11.2024 01:07 β π 25 π 3 π¬ 2 π 0
Got the #DisabledInSTEM Starter Pack up and running!
Can't wait to see the list grow and meet new connections! π
go.bsky.app/SwJ4rFX
17.11.2024 18:19 β π 151 π 77 π¬ 39 π 9
Please do!! Iβll be looking out for it!
17.11.2024 15:51 β π 1 π 0 π¬ 0 π 0
Book author, public health advocate, #genetics PhD. Creatively driven, scientifically inspired. Mom of 2 with the rare health condition #PKU. https://jjbrownauthor.com/ is my #author site, "When the Baby Is Not OK: Hopes & Genes" my newest book.
Dad, husband, President, citizen. barackobama.com
European Huntington's Disease Network newsletter. Editor: Catherine Deeprose. Views are my own and RTs are not endorsements. Email: newsletter@ehdn.org
Sen. Sanders of Vermont, Ranking Member of the U.S. Senate Committee on Health, Education, Labor & Pensions, is the longest-serving independent in congressional history.
leading monthly multi-specialty journal for hospital doctors and other healthcare workers.
Link: https://magonlinelibrary.com/journal/hmed
EmailοΌlydia@bjhmhealth.com
Web development, data management and visualizations. Consulting services for scientific and r&d communities. https://www.researchelements.org/
The Ontario SPOR SUPPORT Unit (OSSU) is a network of 14 health Research Centres and 8 Research Initiatives, that engages researchers, patients and other partners in patient-oriented research to improve the health of Ontarians and the health care system.
Research assistant @idea.nursing.ubc.ca and co-lead @cspsc.ca. Exploring how #SocialPrescribing can improve health and social care for older adults and people living with dementia. He/him.
CIHR funded training program to build capacity for equitable artificial intelligence and machine learning for public health research, policy, and practice. Visit: ai4ph-hrtp.ca
the modern peer is a scientist-led blog dedicated to making academic publishing more transparent and accessible.
Subscribe here: https://www.themodernpeer.com
And reach out if you would like to contribute with a guest post!
Official Bluesky account for The British Pain Society
The oldest and largest multidisciplinary professional organisation in the field of pain within the UK, registered as a charity on 29 November 1979.
https://www.britishpainsociety.org/
Anesthesiology and Anesthesiology Open promote scientific discovery and knowledge in perioperative, critical care, pain, palliative care, and sleep medicine to advance patient care.
π anesthesiology.org π» anesthesiologyopen.org
Pediatric anesthesiologist at BC Childrenβs Hospital | PART co-lead | CASIEF chair | mum to two awesome girls | views are my own π¨π¦
Supporting the best possible perioperative care of children through community, education, quality improvement, and research.
www.pediatricanesthesia.ca
https://www.instagram.com/cpas_official?igsh=MWNueTZnaHN5a243ag%3D%3D&utm_source=qr
Associate Professor in Health Science at California State University Channel Islands. Trained in medical sociology and gerontology. Focused on community-engaged work addressing health, well-being, and equity among older adults and LGBTQIA+. (he/him)
The official account for Unity Health Toronto, comprised of Providence Healthcare, St. Joseph's Health Centre and St. Michaelβs Hospital. #BestCareExperiences
Derek, 21, disabled, chronically ill, non-binary (they), and queer person.
Lead Advocate @ Derek Schmitz: Advocacy, accessibility consultant, author, and paralegal. Views mine, not a lawyer.
go.derekschmitz.com
Alabama, USA
Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh