EuroBioForum 2013 - Day 2 | Mark PoznanskyEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# REGIONAL PERSPECTIVES #
Ontario Genomics Institute, Canada:
Innovative Research, Innovative Translation
Dr Mark Poznansky
President and CEO Ontario Genomics Institute
=======================================
http://www.eurobioforum.eu
Derick Mitchell_Biobanking from the patient perspective.pdfipposi
IPPOSI CEO Derick Mitchell presented the patient perspective on biobanking at the 2023 WECAN Academy for Cancer Patient Advocates on July 2nd, 2023 in Frankfurt, Germany.
EuroBioForum 2013 - Day 2 | Mark PoznanskyEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# REGIONAL PERSPECTIVES #
Ontario Genomics Institute, Canada:
Innovative Research, Innovative Translation
Dr Mark Poznansky
President and CEO Ontario Genomics Institute
=======================================
http://www.eurobioforum.eu
Derick Mitchell_Biobanking from the patient perspective.pdfipposi
IPPOSI CEO Derick Mitchell presented the patient perspective on biobanking at the 2023 WECAN Academy for Cancer Patient Advocates on July 2nd, 2023 in Frankfurt, Germany.
Presentation by Sara Selig, MD, MPH. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
UCLA CTSI K Workshop - February 4, 2016
Mariko Ishimori, MD
Associate Health Sciences Clinical Professor of Medicine
Cedars-Sinai Medical Center CTSI Associate Leader UCLA Clinical & Translational Science Institute
Looking at how health research impacts health programming and policy-making in international development, the African Medical and Research Foundation hosted a discussion highlighting some of the themes laid out in this slideshow.
Presentation by Clare Woods, Business Development Manager for MedTech, NIHR at Excel in Health: developing your innovation for business on Tuesday 12 March 2019 at the Innovation Centre, Daresbury.
Evidence to Care: Mobilizing Childhood Disability Research into Practice
Dr. Shauna Kingsnorth
Evidence to Care Lead
Clinical Study Investigator
Assistant Professor (status), Department of Occupational Science
and Occupational Therapy, University of Toronto
Holland Bloorview Kids Rehabilitation Hospital
skingsnorth@hollandbloorview.ca
Presented at: Canadian Knowledge Mobilization Forum
Saskatoon, Saskatchewan June 9, 2014
The S.T.A.R. Initiative Knowledge Exchange and Engagement Program Touring Exh...Regina Greer-Smith LFACHE
The Knowledge Exchange and Engagement Exhibit is a year-long traveling exhibit to engage patients, researchers, caregivers, and stakeholders to foster collaboration and discussion of the benefits of research for better health outcomes and shared-decision making
The Clinical and Translational Science Awards (CTSA) Program: What can it do ...CTSciNet .org
Meeting: Physician-Scientist Career Development Meeting, New York Academy of Sciences, November 3-5, 2010
Panel: Successful Strategies for the Physician-Scientist
Presentation: The Clinical and Translational Science Awards (CTSA) Program: What can it do for you?
Speaker: Lisa Guay-Woodford, M.D., Professor and Vice Chair of Genetics, CTSA director, University of Alabama, Birmingham
View online with audio at http://community.sciencecareers.org/ctscinet/groups/sessions/2010/12/the-ctsa-program.php
Dr Michael Sullivan
Associate Professor of Paediatric Oncology, University of Otago; Consultant Paediatric Haematologist/Oncologist in the Children’s Haematology Oncology Centre, Christchurch Hospital
Presentation by Sara Selig, MD, MPH. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
UCLA CTSI K Workshop - February 4, 2016
Mariko Ishimori, MD
Associate Health Sciences Clinical Professor of Medicine
Cedars-Sinai Medical Center CTSI Associate Leader UCLA Clinical & Translational Science Institute
Looking at how health research impacts health programming and policy-making in international development, the African Medical and Research Foundation hosted a discussion highlighting some of the themes laid out in this slideshow.
Presentation by Clare Woods, Business Development Manager for MedTech, NIHR at Excel in Health: developing your innovation for business on Tuesday 12 March 2019 at the Innovation Centre, Daresbury.
Evidence to Care: Mobilizing Childhood Disability Research into Practice
Dr. Shauna Kingsnorth
Evidence to Care Lead
Clinical Study Investigator
Assistant Professor (status), Department of Occupational Science
and Occupational Therapy, University of Toronto
Holland Bloorview Kids Rehabilitation Hospital
skingsnorth@hollandbloorview.ca
Presented at: Canadian Knowledge Mobilization Forum
Saskatoon, Saskatchewan June 9, 2014
The S.T.A.R. Initiative Knowledge Exchange and Engagement Program Touring Exh...Regina Greer-Smith LFACHE
The Knowledge Exchange and Engagement Exhibit is a year-long traveling exhibit to engage patients, researchers, caregivers, and stakeholders to foster collaboration and discussion of the benefits of research for better health outcomes and shared-decision making
The Clinical and Translational Science Awards (CTSA) Program: What can it do ...CTSciNet .org
Meeting: Physician-Scientist Career Development Meeting, New York Academy of Sciences, November 3-5, 2010
Panel: Successful Strategies for the Physician-Scientist
Presentation: The Clinical and Translational Science Awards (CTSA) Program: What can it do for you?
Speaker: Lisa Guay-Woodford, M.D., Professor and Vice Chair of Genetics, CTSA director, University of Alabama, Birmingham
View online with audio at http://community.sciencecareers.org/ctscinet/groups/sessions/2010/12/the-ctsa-program.php
Dr Michael Sullivan
Associate Professor of Paediatric Oncology, University of Otago; Consultant Paediatric Haematologist/Oncologist in the Children’s Haematology Oncology Centre, Christchurch Hospital
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
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
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)
One of the most developed cities of India, the city of Chennai is the capital of Tamilnadu and many people from different parts of India come here to earn their bread and butter. Being a metropolitan, the city is filled with towering building and beaches but the sad part as with almost every Indian city
CHAPTER 1 SEMESTER V - ROLE OF PEADIATRIC NURSE.pdfSachin Sharma
Pediatric nurses play a vital role in the health and well-being of children. Their responsibilities are wide-ranging, and their objectives can be categorized into several key areas:
1. Direct Patient Care:
Objective: Provide comprehensive and compassionate care to infants, children, and adolescents in various healthcare settings (hospitals, clinics, etc.).
This includes tasks like:
Monitoring vital signs and physical condition.
Administering medications and treatments.
Performing procedures as directed by doctors.
Assisting with daily living activities (bathing, feeding).
Providing emotional support and pain management.
2. Health Promotion and Education:
Objective: Promote healthy behaviors and educate children, families, and communities about preventive healthcare.
This includes tasks like:
Administering vaccinations.
Providing education on nutrition, hygiene, and development.
Offering breastfeeding and childbirth support.
Counseling families on safety and injury prevention.
3. Collaboration and Advocacy:
Objective: Collaborate effectively with doctors, social workers, therapists, and other healthcare professionals to ensure coordinated care for children.
Objective: Advocate for the rights and best interests of their patients, especially when children cannot speak for themselves.
This includes tasks like:
Communicating effectively with healthcare teams.
Identifying and addressing potential risks to child welfare.
Educating families about their child's condition and treatment options.
4. Professional Development and Research:
Objective: Stay up-to-date on the latest advancements in pediatric healthcare through continuing education and research.
Objective: Contribute to improving the quality of care for children by participating in research initiatives.
This includes tasks like:
Attending workshops and conferences on pediatric nursing.
Participating in clinical trials related to child health.
Implementing evidence-based practices into their daily routines.
By fulfilling these objectives, pediatric nurses play a crucial role in ensuring the optimal health and well-being of children throughout all stages of their development.
ICH Guidelines for Pharmacovigilance.pdfNEHA GUPTA
The "ICH Guidelines for Pharmacovigilance" PDF provides a comprehensive overview of the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) guidelines related to pharmacovigilance. These guidelines aim to ensure that drugs are safe and effective for patients by monitoring and assessing adverse effects, ensuring proper reporting systems, and improving risk management practices. The document is essential for professionals in the pharmaceutical industry, regulatory authorities, and healthcare providers, offering detailed procedures and standards for pharmacovigilance activities to enhance drug safety and protect public health.
R3 Stem Cells and Kidney Repair A New Horizon in Nephrology.pptxR3 Stem Cell
R3 Stem Cells and Kidney Repair: A New Horizon in Nephrology" explores groundbreaking advancements in the use of R3 stem cells for kidney disease treatment. This insightful piece delves into the potential of these cells to regenerate damaged kidney tissue, offering new hope for patients and reshaping the future of nephrology.
Empowering ACOs: Leveraging Quality Management Tools for MIPS and BeyondHealth Catalyst
Join us as we delve into the crucial realm of quality reporting for MSSP (Medicare Shared Savings Program) Accountable Care Organizations (ACOs).
In this session, we will explore how a robust quality management solution can empower your organization to meet regulatory requirements and improve processes for MIPS reporting and internal quality programs. Learn how our MeasureAble application enables compliance and fosters continuous improvement.
Explore our infographic on 'Essential Metrics for Palliative Care Management' which highlights key performance indicators crucial for enhancing the quality and efficiency of palliative care services.
This visual guide breaks down important metrics across four categories: Patient-Centered Metrics, Care Efficiency Metrics, Quality of Life Metrics, and Staff Metrics. Each section is designed to help healthcare professionals monitor and improve care delivery for patients facing serious illnesses. Understand how to implement these metrics in your palliative care practices for better outcomes and higher satisfaction levels.
The dimensions of healthcare quality refer to various attributes or aspects that define the standard of healthcare services. These dimensions are used to evaluate, measure, and improve the quality of care provided to patients. A comprehensive understanding of these dimensions ensures that healthcare systems can address various aspects of patient care effectively and holistically. Dimensions of Healthcare Quality and Performance of care include the following; Appropriateness, Availability, Competence, Continuity, Effectiveness, Efficiency, Efficacy, Prevention, Respect and Care, Safety as well as Timeliness.
Leading the Way in Nephrology: Dr. David Greene's Work with Stem Cells for Ki...Dr. David Greene Arizona
As we watch Dr. Greene's continued efforts and research in Arizona, it's clear that stem cell therapy holds a promising key to unlocking new doors in the treatment of kidney disease. With each study and trial, we step closer to a world where kidney disease is no longer a life sentence but a treatable condition, thanks to pioneers like Dr. David Greene.
Day 2: Thierry Lacaze-Masmonteil, Maternal Infant Child Youth Research Network
1. MICYRN – Connecting Minds and Removing Barriers to
High-Quality Health Research
CORD conference – Ottawa
June 08th, 2022
2. MICYRN respectfully acknowledges the Indigenous
Peoples of all the lands. From coast to coast to
coast, we acknowledge the ancestral and unceded
territory of all the Inuit, Métis, and First Nations
people that call this land home.
Please take a moment, in your own time, to reflect
and recognize the lands you are logging in from
today
https://native-land.ca/
3. A national maternal/child health
research network
• Established in 2006
• Linking all of the 18 child and the three of the largest maternal health research
organizations in Canada
• Incorporated non-profit, registered charity 2011
• BOD, executive team, with coordinating centre in BC
• Funded by RIs, Foundations and Departments (also supplemented by CIHR and
Genome Canada via Rare Diseases Network, Canadian Childhood Cannabinoid
Clinical Trials Network, some fee-for-service support agreements with other
organizations).
5. National Coordinating Centre
Logistical Support
Communication and KT
Finances and Project Management
Maintaining Partnerships
MICYRN Board of Directors
Associate
Director
Clinical Trials
Scientific
Director
Executive
Director
Engagement
Associate
Administrative
Assistant
Clinical Trials Platform
• Pediatric Clinical Research Units
at 18 Academic Child Health
Centers : The “consortium”
• ARO services – Delegated tasks
of sponsorship
MICYRN Research Organization
Members
MICYRN
Executive
6. Affiliated Hospitals and Research
Organizations
BC Children’s Hospital (Vancouver) BC Children’s Hospital Research Institute
Alberta Children’s Hospital (Calgary) Alberta Children’s Hospital Research Institute
Stollery Children’s Hospital (Edmonton) Women & Children’s Health Research Institute
Jim Pattison Children’s Hospital (Saskatoon) Dept of Pediatrics, University of Saskatchewan
Children’s Hospital (Winnipeg) Children’s Hospital Research Institute of Manitoba
Children’s Hospital at London Health Sciences Children’s Health Research Institute – Western U
McMaster Children’s Hospital (Hamilton) Dept of Pediatrics, McMaster University
Sick Kids (Toronto) Sick Kids Research Institute
Holland Bloorview Kids Rehab Hospital (Toronto) Bloorview Research Institute
Mont Sinai Hospital (Toronto) Lunenfeld-Tanenbaum Research Institute
Sunnybrook Hospital (Toronto) Sunnybrook Health Sciences Centre
Kingston Health Sciences Centre Dep of Pediatrics, Queen’s University
Children’s Hospital of Eastern Ontario (Ottawa)) CHEO Research Institute
Montreal Children’s Hospital Research Institute at McGill U Health Centre
CHU Sainte-Justine (Montreal) Centre de Recherche Sainte-Justine
Hopital Fleurimont (CHUS, Sherbrooke) Dept of Pediatrics, University of Sherbrooke
CHUL et Centre mere-enfant Soleil (Quebec City) Centre de Recherche du CHU de Quebec, Laval U
IWK Health Centre (Halifax) IWK Health Centre
Janeway Children’s Health Centre (St. John’s) Dept of Pediatrics, Memorial University
7. Advocacy and National
Partnerships
• Maternal/Child and Youth Health Research Director Council – national voice and
direction, collaborative opportunities, COVID-19 challenges/approaches, advocacy
• Paediatric Chairs of Canada (PCC) – advocacy, resident research
• Children’s Healthcare Canada (CHC) – clinical investigation unit partnerships with
hospitals, advocacy
• Health Canada: OPPI and OCT – coordinated advocacy, consultation
- GPFC, CPS, CHC, PCC, C17, other networks, institutions
- Agile Regulation – Modernizing Pediatric Clinical Trials Regulations
- Patented Medicines Pricing Review, Pediatric Drug Action Plan
- National Strategy on High-Cost drugs for Rare Diseases
8.
9. National Collaborations
• Rare Diseases: Models & Mechanisms Network (RDMM)
• Canadian Childhood Cannabinoid Clinical Trials Network
• MICYRN and Child Bright partnering for renewal (CIHR SPOR network – chronic
diseases): Lessons learnt from Child Bright #1
• Canadian Pediatric COVID 19 research Platform (NPI Dr. Caroline Quach): MICYRN
coordinating centre.
10. National Pediatric Clinical Trials
Infrastructure
Tactics to improve Canadian child health through increased access to high-quality
clinical trials supported by an efficient, safe, and family-centered national
infrastructure.
1. Support the development of clinical trials unit (CTU) capability across the
research organizations (e.g. national CTU capability database, delegated
sponsorship tasks)
2. Develop multicentre trial guidance tools and resources (e.g. trials checklists,
contracts lawyer network, support for trials submissions to Health Canada)
3. Build expertise as the “single-point” of contact for clinical trials to for the
investigator community and industry (expertise pool of investigators, specialty
research networks and industry centres of excellence)
11. Removing Barriers
• Through partnerships with academia, MICYRN is assisting international and
national investigators in the planning, development, and execution of non-
oncology, multi-centre, maternal/child health clinical trials
• Centralized national infrastructure
• Academic Research Organization (ARO)-like function
12. ARO Services
Pre-Award Services (In-kind) Post-Award Services (Cost Recovery)
Protocol Transition
Health Canada Regulatory Submissions
Harmonized Ethics Support
Cross Institutional Monitoring Program
Contracts Facilitation
Safety and Adverse Event Reporting
Data Management
Project Management
Placebo Development and Drug Procurement
Consultation (Regulatory and Budget)
Scientific Depth and Protocol Optimization
Letter of Support
13. Clinical Trial Sponsorship
• Increase the number of CTs
that Canadian children can
participate in
• Acquired clinical trial
insurance
• Serve as the Canadian
Regulatory Sponsor for
investigator initiated clinical
trials
14. Proposal to Establish a Canadian
Maternal/Child Health Clinical Trial
Infrastructure to Support Canada’s
National Strategy on High-Cost Drugs
for Rare Diseases
• Ensure effective novel therapeutics and interventions are
available for children and their families with rare diseases
• Improve equal access to, and foster diversity and inclusion in
clinical trials
• Implement processes to acquire data from CTs, real world
data, registries
• Generate high quality data to inform HC and facilitate
decision making processes for access and pricing