This document provides an update on the Pediatric Vasculitis Initiative (PedVas) from its meeting at the 2015 CORD Rare Disease Conference. PedVas is an international collaboration between clinicians and researchers studying childhood vasculitis. It aims to support existing clinical networks through collection and analysis of biological samples and knowledge translation. The update describes two case studies of children diagnosed with vasculitis, preliminary clinical data on outcomes in pediatric systemic vasculitis, biomarker research identifying elevated S100A12 levels in active vasculitis, and gene expression profiling of samples collected through the initiative.
A Rare International Dialogue (Saturday May 11, 2019)
Designing Pathways to Patient-Centered Care
Bone marrow as a Vehicle for Correction of Rare Disorders: Donna Wall, The Hospital for Sick Children
Real-World Data and Real-World Evidence Webinar
Panelists
Tara Cowling, Medlior
Laurie Lambert, CADTH
Craig Campbell, London Health Sciences
Sandra Anderson, Innomar Strategies
Brad Alyward, Canadian Organization for Rare Disorders
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
A Rare International Dialogue (Saturday May 11, 2019)
Designing Pathways to Patient-Centered Care
Bone marrow as a Vehicle for Correction of Rare Disorders: Donna Wall, The Hospital for Sick Children
Real-World Data and Real-World Evidence Webinar
Panelists
Tara Cowling, Medlior
Laurie Lambert, CADTH
Craig Campbell, London Health Sciences
Sandra Anderson, Innomar Strategies
Brad Alyward, Canadian Organization for Rare Disorders
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
Oncology Dynamics captures a substantial part of oncological patient treatment journey. It provides real world insights into how standards of care and treatment landscape differ across healthcare systems.
How can one regulatory program simultaneously benefit both blockbuster drugs and rare or neglected diseases? How can your company leverage the opportunities afforded by this program? This presentation walks you through the how’s and why’s of the FDA’s Priority Review Voucher program.
Oncology Dynamics captures a substantial part of oncological patient treatment journey. It provides real world insights into how standards of care and treatment landscape differ across healthcare systems.
How can one regulatory program simultaneously benefit both blockbuster drugs and rare or neglected diseases? How can your company leverage the opportunities afforded by this program? This presentation walks you through the how’s and why’s of the FDA’s Priority Review Voucher program.
Rare Diseases: A Report on Orphan Drugs in the PipelinePhRMA
Rare diseases, when taken together, are not that rare at all. In fact, according to the National Institutes of Health (NIH), 30 million Americans have one of the nearly 7,000 diseases that are officially deemed “rare” because alone they each affect fewer than 200,000 people in the United States.
Author: Danielle Cassidy, Pharm.D., BCPS
Audience: Third year pharmacy students at University of Colorado School of Pharmacy
Background: describes common causes of seizures, differentiates dosing of antiepileptic drugs in pediatrics vs. adults, common risk factors associated with febrile seizures, treatment of febrile seizures, treatment of status epilepticus (inpatient & outpatient), & how to dispense/counsel parents on the administration of Diastat.
CORD Rare Drug Conference: June 8 - 9, 2022
The Ottawa Pediatric Bone Health Research Group and The Canadian Consortium for Children’s Bone Health/Canadian Alliance for Rare Disorders of the Skeleton - Leanne Ward, CHEO
Daniel Catchpoole describes institutional experience with Biobanking in Australia.
This talk was sponsored by the NIH Data Science Special Interest Group and part of a webinar panel on June 23, 2017 on Global Biobanking and Access to Specimens.
The views expressed in the presentations are that of the author and do not necessarily reflect the views of the Government of Canada. Presentations are shared in the original format received from the presenter.
Presentations given at the Conference to Develop a Federal Framework on Lyme Disease are the property of the author, unless otherwise cited. If you reference the author's work, you must give the author credit by naming the author and their work as well as the place and date it was presented.
For more information, contact the Lyme Disease Conference Secretariat at maladie_lyme_disease@phac-aspc.gc.ca
Webinar: Increase research efficiency and enable collaboration with the IDBS ...IDBS
Streamline patient stratification together with omics and sample management
Find out how the solution enables research scientists and clinicians across Healthcare, Pharma and other Life Sciences organizations to create a comprehensive research platform that empowers high quality decision-making. It provides the building blocks to allow clinical researchers to capture and curate their data, to manage ontologies, and to integrate, search and visualize data from clinical, biobanks and omics data sources.
In this webinar you will see how to:
- improve sample management
- capture Data Provenance
- stratify patient populations
- explore omics data in the context of clinical phenotype
- facilitate a results sharing culture between departments and collaborators
To view the webinar: http://www.idbs.com/en/news-events/list-of-webinars/2014/03/increase-research-efficiency-and-enable-collaboration-with-the-idbs-translational-science-solution/
NIH Research grants (R series) are an important funding mechanism for independent investigators as these awards offer the opportunity to head up major research projects.
In this presentation, Dr. Ian de Boer will leverage his experience from winning six different R awards to provide R series grant writing strategies. He explores: which R award is best for you; readiness and qualifications for independent support; formulating focused and solid research strategies; how to avoid common mistakes; tips for early investigators; and NIH expectations and grant requirements.
On this webinar, we’ll hear from experts on the issue and invite an open conversation with stakeholders. We need discussion, shared questions and answers and a review of case studies, which is why we are hosting this session.
Panelist:
Neil Palmer, Principal Consultant, WN Palmer & Co. and former PMPRB staff
Michael Dietrich, Executive Director, Policy, Innovative Medicines Canada
Laurene Redding, Global Head, Strategic Pricing (ex-China), BeiGene
Durhane Wong-Rieger, President & CEO, CORD
Moderator: Bill Dempster, CEO, 3Sixty Public Affairs
CORD Rare Drug Conference: June 8-9, 2022
Registries and Real-World Data
INFORM RARE: Beth Potter, Alexandra Wyatt, Pranesh Chakraborty,
Monica Lamoureux, John Adams, Kim Angel
CORD Rare Drug Conference: June 8-9, 2022
Registries and Real-World Data
INFORM RARE: Beth Potter, Alexandra Wyatt, Pranesh Chakraborty,
Monica Lamoureux, John Adams, Kim Angel Opportunities and Challenges for Data Management
CORD Rare Drug Conference June 8-9, 2022
Global, International, and National Rare Disease Networks
Rare Disease Research Network and National Children’s Hospital - Marshall
Summar, Rare Disease Institute
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
WHO-RDI Global Rare Disease Network - Matt Bolz-Johnson, EURORDIS
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
Canadian Network of Rare Disease Centres of Excellence - Paula Robeson, Children’s Healthcare Canada
CORD Rare Drug Conference: June 8-9, 2022
What is status of Canadian access for RD drugs?
• Canada access and Rest of World - Alexandra Chambers, Novartis
• Canada access to essential rare disease drugs - Nigel Rawson
More from Canadian Organization for Rare Disorders (20)
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
Report Back from SGO 2024: What’s the Latest in Cervical Cancer?bkling
Are you curious about what’s new in cervical cancer research or unsure what the findings mean? Join Dr. Emily Ko, a gynecologic oncologist at Penn Medicine, to learn about the latest updates from the Society of Gynecologic Oncology (SGO) 2024 Annual Meeting on Women’s Cancer. Dr. Ko will discuss what the research presented at the conference means for you and answer your questions about the new developments.
Title: Sense of Smell
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the primary categories of smells and the concept of odor blindness.
Explain the structure and location of the olfactory membrane and mucosa, including the types and roles of cells involved in olfaction.
Describe the pathway and mechanisms of olfactory signal transmission from the olfactory receptors to the brain.
Illustrate the biochemical cascade triggered by odorant binding to olfactory receptors, including the role of G-proteins and second messengers in generating an action potential.
Identify different types of olfactory disorders such as anosmia, hyposmia, hyperosmia, and dysosmia, including their potential causes.
Key Topics:
Olfactory Genes:
3% of the human genome accounts for olfactory genes.
400 genes for odorant receptors.
Olfactory Membrane:
Located in the superior part of the nasal cavity.
Medially: Folds downward along the superior septum.
Laterally: Folds over the superior turbinate and upper surface of the middle turbinate.
Total surface area: 5-10 square centimeters.
Olfactory Mucosa:
Olfactory Cells: Bipolar nerve cells derived from the CNS (100 million), with 4-25 olfactory cilia per cell.
Sustentacular Cells: Produce mucus and maintain ionic and molecular environment.
Basal Cells: Replace worn-out olfactory cells with an average lifespan of 1-2 months.
Bowman’s Gland: Secretes mucus.
Stimulation of Olfactory Cells:
Odorant dissolves in mucus and attaches to receptors on olfactory cilia.
Involves a cascade effect through G-proteins and second messengers, leading to depolarization and action potential generation in the olfactory nerve.
Quality of a Good Odorant:
Small (3-20 Carbon atoms), volatile, water-soluble, and lipid-soluble.
Facilitated by odorant-binding proteins in mucus.
Membrane Potential and Action Potential:
Resting membrane potential: -55mV.
Action potential frequency in the olfactory nerve increases with odorant strength.
Adaptation Towards the Sense of Smell:
Rapid adaptation within the first second, with further slow adaptation.
Psychological adaptation greater than receptor adaptation, involving feedback inhibition from the central nervous system.
Primary Sensations of Smell:
Camphoraceous, Musky, Floral, Pepperminty, Ethereal, Pungent, Putrid.
Odor Detection Threshold:
Examples: Hydrogen sulfide (0.0005 ppm), Methyl-mercaptan (0.002 ppm).
Some toxic substances are odorless at lethal concentrations.
Characteristics of Smell:
Odor blindness for single substances due to lack of appropriate receptor protein.
Behavioral and emotional influences of smell.
Transmission of Olfactory Signals:
From olfactory cells to glomeruli in the olfactory bulb, involving lateral inhibition.
Primitive, less old, and new olfactory systems with different path
Pulmonary Thromboembolism - etilogy, types, medical- Surgical and nursing man...VarunMahajani
Disruption of blood supply to lung alveoli due to blockage of one or more pulmonary blood vessels is called as Pulmonary thromboembolism. In this presentation we will discuss its causes, types and its management in depth.
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Ozempic: Preoperative Management of Patients on GLP-1 Receptor Agonists Saeid Safari
Preoperative Management of Patients on GLP-1 Receptor Agonists like Ozempic and Semiglutide
ASA GUIDELINE
NYSORA Guideline
2 Case Reports of Gastric Ultrasound
micro teaching on communication m.sc nursing.pdfAnurag Sharma
Microteaching is a unique model of practice teaching. It is a viable instrument for the. desired change in the teaching behavior or the behavior potential which, in specified types of real. classroom situations, tends to facilitate the achievement of specified types of objectives.
These lecture slides, by Dr Sidra Arshad, offer a quick overview of physiological basis of a normal electrocardiogram.
Learning objectives:
1. Define an electrocardiogram (ECG) and electrocardiography
2. Describe how dipoles generated by the heart produce the waveforms of the ECG
3. Describe the components of a normal electrocardiogram of a typical bipolar leads (limb II)
4. Differentiate between intervals and segments
5. Enlist some common indications for obtaining an ECG
Study Resources:
1. Chapter 11, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 9, Human Physiology - From Cells to Systems, Lauralee Sherwood, 9th edition
3. Chapter 29, Ganong’s Review of Medical Physiology, 26th edition
4. Electrocardiogram, StatPearls - https://www.ncbi.nlm.nih.gov/books/NBK549803/
5. ECG in Medical Practice by ABM Abdullah, 4th edition
6. ECG Basics, http://www.nataliescasebook.com/tag/e-c-g-basics
Ethanol (CH3CH2OH), or beverage alcohol, is a two-carbon alcohol
that is rapidly distributed in the body and brain. Ethanol alters many
neurochemical systems and has rewarding and addictive properties. It
is the oldest recreational drug and likely contributes to more morbidity,
mortality, and public health costs than all illicit drugs combined. The
5th edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) integrates alcohol abuse and alcohol dependence into a single
disorder called alcohol use disorder (AUD), with mild, moderate,
and severe subclassifications (American Psychiatric Association, 2013).
In the DSM-5, all types of substance abuse and dependence have been
combined into a single substance use disorder (SUD) on a continuum
from mild to severe. A diagnosis of AUD requires that at least two of
the 11 DSM-5 behaviors be present within a 12-month period (mild
AUD: 2–3 criteria; moderate AUD: 4–5 criteria; severe AUD: 6–11 criteria).
The four main behavioral effects of AUD are impaired control over
drinking, negative social consequences, risky use, and altered physiological
effects (tolerance, withdrawal). This chapter presents an overview
of the prevalence and harmful consequences of AUD in the U.S.,
the systemic nature of the disease, neurocircuitry and stages of AUD,
comorbidities, fetal alcohol spectrum disorders, genetic risk factors, and
pharmacotherapies for AUD.
Explore natural remedies for syphilis treatment in Singapore. Discover alternative therapies, herbal remedies, and lifestyle changes that may complement conventional treatments. Learn about holistic approaches to managing syphilis symptoms and supporting overall health.
- Video recording of this lecture in English language: https://youtu.be/lK81BzxMqdo
- Video recording of this lecture in Arabic language: https://youtu.be/Ve4P0COk9OI
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
- Link to NephroTube social media accounts: https://nephrotube.blogspot.com/p/join-nephrotube-on-social-media.html
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Pediatric Vasculitis Initiative (PedVas) A CIHR Emerging Team Grant in Rare Disease (2012)
1. Pediatric Vasculitis Initiative (PedVas)
Update for CORD Rare Disease Conference,
March 2015
Susa Benseler, MD PhD
Chief Rheumatology, Alberta Children’s Hospital
on behalf of
David Cabral
Dirk Foell
Jinko Graham
Bob Hancock
Raashid Luqmani
Colin Ross
International childhood vasculitis investigators
contributing to ARChiVe, BrainWorks & DCVAS
A CIHR Emerging Team Grant in Rare Disease (2012)
2. Pediatric Vasculitis Initiative (PedVas)
• CIHR- , Vasculitis foundation and CORD-
supported opportunity to support existing
clinical childhood vasculitis networks with a
translational research component involving
collection & analysis of biological samples and
Knowledge Translation
• International & multi-disciplinary collaboration
between bench scientists and clinicians
3.
4. 9 year old girl
• ER: presented with weeks of fever on and off,
fatigue, congestion, swollen glands,
nosebleeds and cough
• Previously perfectly healthy
5. Laboratory test results
• High levels of inflammatory markers
• No evidence of infection
• Positive ANCA antibodies
9. 6 year old girl
• For 2 weeks complaining
of nausea, headaches,
mood changes, school
concentration difficulties
• ? Virus infection
(pediatrician)
• ER: blood work and CT
normal
10. • Perfectly health in the past medical history
• No travel, no infection, no injury
6 year old girl
11. Laboratory test results
• High levels of inflammatory markers
• No evidence of brain infection or bleed
• Spinal tap: inflammation/irritation
12. Acute worsening
• Vomiting, headache,
• Decreased level of
conciousness,
• neck stiffness
• Seizure status
• No fever, no other
symptoms
16. Questions asked by families and
health care providers
• What is childhood vasculitis?
• What caused it? Are siblings at risk?
• How to best make the diagnosis and avoid
invasive tests?
• Is there a cure?
• Which treatment to choose? Are the
treatments dangerous?
• How will this affect her future?
17. A registry for childhood systemic vasculitis
• 40 US/Canadian centers
• Launched 2008
A prospective registry for CNS vasculitis
• 210 centers around the word
• Launched 2010
Building international networks…
David Cabral and Susa Benseler
18. • Approach: Learn from each and every child
• Web-based, password secured
prospective data collections that connect
physicians of many disciplines around the world
• Provides treatment protocols, SOPs, review
scales, outcome tools, literature updates and
second opinions
• Publications, advocacy, data ownership rule
30. Questions asked by families and
health care providers
• What is childhood vasculitis?
• What caused it? Are siblings at risk?
• How to best make the diagnosis and avoid
invasive tests?
• Which treatment to choose? Are the
treatments dangerous?
• How will this affect her future?
• Is there a cure?
35. Questions asked by families and
health care providers
• What is childhood vasculitis?
• What caused it? Are her siblings at risk?
• How to best make the diagnosis and avoid
invasive tests?
• Which treatment to choose? Are the
treatments dangerous?
• How will this affect her future?
• Is there a cure?
40. Canadian Neuropathology study
• Neuropathologists across Canada, external
experts including Harry Vinters, lead: Cynthia
Hawkins
• Tasks:
– development and validation of a Brain Biopsy Review
Tool for Childhood CNS vasculitis
– Defining childhood CNS vasculitis histologically
Tool development completed, RedCap version
Validation: 50 biopsies (cPACNS, other IBrainD,
epilepsy surgery specimens)
• Consensus meeting, Manuscripts in preparation
41. Towards a histological diagnosis of cPACNS
30 SVcPACNS cases
10 epilepsy controls
10 inflammatory controls
42. Questions asked by families and
health care providers
• What is childhood vasculitis?
• What caused it? Are her siblings at risk?
• How to best make the diagnosis and avoid
invasive tests?
• Is there a cure?
• Which treatment to choose? Are the
treatments dangerous?
• How will this affect her future?
63. • Assessing pediatric phenotype & outcomes.
• Assessing, developing clinical tools (classification,
severity, activity, damage) & treatment protocols
to help physicians
• Embedded comparative study with adults & DCVAS
• Re-evaluating ‘classification’ using
bioinformatics to evaluate clinical data with
linked gene expression profiles.
• Biomarker discovery
PedVas
64. Current Status
Site recruitment
– 48 sites from 10 countries collecting clinical data
– 21 sites from 7 countries with ethics for biosampling
Clinical data
– 381 systemic vasculitis patients
– 228 primary CNS vasculitis patients
(Approx 90% have follow-up data up to 12 months)
Biological samples
– 93 patients contributed (RNA, DNA, serum, plasma, urine)
• First adult (DCVAS) samples collected in Aug ’14
• Abstracts 5, manuscripts: 4 published, 3 in preparation
66. Challenges
Difficulties in cIinical data versus biosamples!
• ethics approval challenges for blood collection and
shipping across borders
• contract negotiations between universities because
funding is being provided
• workload (& costs) for bio-sampling and shipping
• Some countries sites prohibit release of biosamples
Study start-up activities taking up to 12 months per site
(ethics approval, contract negotiation, laboratory set-up, training)
67. Site Initiation Timeline
New site or
Existing ARChiVe/
Brainworks site
Ethics amendment or
Brand new application
Agreements Review
-Funds Transfer Letter
- Material Transfer
Agreement (if required)
- UBC UILO Office
- Site Legal Office
• Time to ethics approval: 10 months
(Ranges 2 - 19 m (some pending for > 20 months)
• Time to fully signed agreement: 4 months
(Ranges 1 to 8 m (some pending for > 13 months)
Average
time:
4 months
Average
time:
10 months
Site Study Start-up
- Laboratory Set-up
- Site Initiation
Call/Training
- Database access
- Supplies mailed
Recruitment!
Approx
1 month
Approx
1 month
68. Preliminary Data:
Early outcomes in pediatric systemic vasculitis
Morishita K, et al at ACR Boston 2014
• 79 children: 6- and 12-month outcomes
• Primary findings:
– Majority had severe disease with kidney failure and lung bleeds
disease
– Only half achieved remission by 6 months
– Only two thirds achieved remission by 12 months
– One in two children relapses
– A significant proportion of patients have evidence of damage
even by 12 months
69. Preliminary Data:
S100 A12 Biomarkers
S100A12 measured healthy
people and children with
vasculitis
Serum S100A12 levels are
highest at the time of diagnosis
when vasculitis is most active.
(More sensitive than ESR & CRP)
Levels decline after treatment,
but rarely reaches levels
measured in serum from healthy
individuals