Crea%ng an XXXX model for rare disease drug discovery: pu7ng people in the driver s seat
|
|
- Cory Montgomery
- 5 years ago
- Views:
Transcription
1 Crea%ng an XXXX model for rare disease drug discovery: pu7ng people in the driver s seat Sharon F. Terry President and CEO, Genetic Alliance Co-founder, PXE International Co-Principal Investigator, PCORnet Coordinating Center
2 Why Am I Here? Because this is personal.
3 Elizabeth and Ian diagnosed with pseudoxanthoma elasticum (PXE) 1994
4
5 Gene Discovery BioBank Tes%ng Clinical Diagnos%c Test Development via FDA & CLIA Regulatory Strategies Human Clinical Trials Paten%ng Licensing & Intellectual Property Management Drug Screening & Development Approaches Therapeu%cs - - Small Molecules - - Nonsense mutants
6 What can be done for one, can be done for all Network of 10,000 organizations Focused on people: individuals, families, communities People-centric, consumer-focused, transformation
7 What Does This Have to Do with People? The SECRET: We do not have answers to health issues that are possible to solve. We, the people, are the answer.
8 Communities Drive Research
9 Content Areas Preconcep)on Prenatal Neonatal Postpartum Early Childhood Partners Health Professional Socie)es MCH Consumer- Oriented Industry Public Health Communica)ons Programs Governmental Agencies
10 Baby s First Test: What We Do Baby s First Test houses the na)on s newborn screening clearinghouse. As the clearinghouse, Baby s First Test connects parents and healthcare providers with extensive informa)on and resources on newborn screening at the local, state, and na)onal levels. We Do This By: ü Training Videos/Webinars ü Continuing Education Opportunities ü Educational Resources ü Details on State Programs ü Information on 77 Conditions
11
12 The Advocacy ATLAS Accessible Tools for Leadership and Advocacy Success atlas 12
13 Dozens of Tools Wikiadvocacy.org 2000 pages of how to DoesItRunInTheFamily.org the simplest gene)c test TrustOrTrash.org who said it, when, why?
14
15
16
17
18 Mosaic: crowd- sourced research Bullet 18
19 Data Access: Data Seekers access health data and contact informa)on, as authorized Contact Informa%on? Data Seekers Allow Prohibit Ask Me Privacy Direc%ves? Allow Prohibit Ask Me Health Data Data Holder Set- up: Trusted organiza)on embeds a PEER entry point into its website, where par)cipants register Data Capture: Individual provides health data through survey ques)ons (or, in future, from their EHR)
20 Par)cipants choose privacy se^ngs If par)cipants choose to customize instead of keeping defaults, they can do so with the help of community guides, or on their own Each guide shares their take on privacy, together with informa)on about why they re par)cipa)ng 20
21 Take custom surveys Registry sponsors can add welcome messages, as well as other content, based on users progress Users take surveys for mul)ple family members, and on behalf of other individuals who have given their permission Add as many surveys (or as few) as you d like
22 Answer gamified ques)ons Ques)ons appear in a dynamic user interface, and provide immediate feedback on how others responded to the same ques)on Par)cipants can review their prior answers, make updates and/or remove the data at any )me
23 And soon Share medical records Share mobile health data Share genomic informa)on Connect to other par)cipants From computers and from mobile devices Available as socware as a service or as open source socware kit
24 Genetic Alliance, with Duke and Harvard, coordinating 20 Patient-Powered Research Networks (PPRNs) 13 + = Clinical Data Research Networks (CDRNs) PCORnet A national infrastructure for people-centered clinical research 24
25 Gene)c Alliance Projects hep:// hep:// hep:// hep:// hep:// hep:// heps:// hep:// hep:// hep://free- the- data.org heps:// heps://
26 Thank you! For more info: Sharon Terry Katherine Lambertson
Common Data Elements: Making the Mass of NIH Measures More Useful
Common Data Elements WG Common Data Elements: Making the Mass of NIH Measures More Useful Jerry Sheehan Assistant Director for Policy Development Na?onal Library of Medicine Gene/c Alliance Webinar Series
More informationEHR Developer Code of Conduct Frequently Asked Questions
EHR Developer Code of Conduct Frequently Asked Questions General What is the purpose of the EHR Developer Code of Conduct? EHR Association (the Association) members have a long tradition of working with
More informationLaunching PCORnet, the National Patient- Centered Clinical Research Network
Launching PCORnet, the National Patient- Centered Clinical Research Network Rachael L. Fleurence, PhD February 25th, 2014 1 PCORnet 2 PCORnet: the National Patient-Centered Clinical Research Network The
More informationTr a n s f o r m i n g h e a l t h A N N U A L R E P O R T
Transforming health ANNUAL REPORT 2014 1 Genetic Alliance engages individuals, families, and communities to transform health; we bring together diverse stakeholders to create novel partnerships in advocacy;
More informationGENET C ALL ANCE ANNUAL REPORT 2015
GENET C ALL ANCE ANNUAL REPORT 2015 1 Genetic Alliance empowers individuals, families, and communities to reclaim their health and THR VE. Individuals and families need resources and tools to participate
More informationPCORnet: The National Patient- Centered Clinical Research Network. A FasterCures Webinar January 29, 2014
PCORnet: The National Patient- Centered Clinical Research Network A FasterCures Webinar January 29, 2014 About FasterCures We are an ac4on tank that works to improve and speed up the 3me it takes to get
More informationEngaging Indigenous communities in health research
Engaging Indigenous communities in health research Josée G. Lavoie, Ongomiizwin Research, Indigenous Ins;tute of Health and Healing, University of Manitoba 1 2 Key messages Indigenous research requires
More informationThe Digital Age of HP2020
The Digital Age of HP2020 Theresa Devine, MPH Office of Disease Preven0on and Health Promo0on (HHS) Sarah Pomerantz, MPH CommunicateHealth, Inc. Ma5 Allen CommunicateHealth, Inc. This Morning s Agenda
More informationInstitute of Medicine Workshop: DIGITAL DATA PRIORITIES FOR CONTINUOUS LEARNING IN HEALTH AND HEALTH CARE
Institute of Medicine Workshop: DIGITAL DATA PRIORITIES FOR CONTINUOUS LEARNING IN HEALTH AND HEALTH CARE Data Quality in Clinical Research 23 March 2012 Rebecca D. Kush, PhD President and CEO, CDISC CDISC
More informationGenetic Alliance Annual Report 2016
Genetic Alliance Annual Report 2016 Genetic Alliance engages individuals, families, and communities to transform health. Individuals and families need and deserve opportunities to be active participants
More informationConnecting the Dots: Alzheimer s PCPRN and the Learning Health System
Connecting the Dots: Alzheimer s PCPRN and the Learning Health System MaryAnne Sterling Healthcare Activist Family Caregiver @SterlingHIT December 9, 2016 2 3 Thumbnail Sketch 20+ years as caregiver, healthcare
More information2018 Conference on Ending Homelessness. Informa(onal Session Proposal Webinar
2018 Conference on Ending Homelessness Informa(onal Session Proposal Webinar Welcome To The Webinar Thank you for joining today s webinar! All par:cipants will be muted during the webinar to ensure good
More informationTHE RARE DISEASES CLINICAL RESEARCH NETWORK AS A NESTED CULTURAL COMMONS
THE RARE DISEASES CLINICAL RESEARCH NETWORK AS A NESTED CULTURAL COMMONS Bre5 Frischmann, Benjamin N. Cardozo School of Law Katherine J. Strandburg, NYU School of Law Can Cui, NYU School of Law Case study
More informationSo now, I d like to share with you who CaringBridge is and the services they provide.
The National Multiple Sclerosis Society and CaringBridge partner together to provide you with free, personal websites to connect you with family and friends when health matters most. It s an easy to use
More informationBiobanking in Finland
Biobanking in Finland Anu Jalanko 28.11.2016 1 Major Health reform in Finland The government has published dra4 bills on health, social services and regional government reform One of the largest ever administra9ve
More informationPhotos of Clients Taken by Other People
www.phototherapy-centre.com Photos OF Clients Photos of Clients Taken by Other People Photos of people that are taken by others let them view the many different ways that other people see them. It also
More informationUses of the NIH Collaboratory Distributed Research Network
Uses of the NIH Collaboratory Distributed Research Network Jeffrey Brown, PhD for the DRN Team Harvard Pilgrim Care Institute and Harvard Medical School March 11, 2016 The Goal The NIH Collaboratory DRN
More informationKeep a list of all doctors, all medications, a history of seizures, and all diagnoses in the car for emergencies.
The Mission of the Mowat-Wilson Syndrome Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.
More informationMay 16, Division of Dockets Management (HFA-305) Food and Drug Administration 5630 Fishers Lane, Room 1061 Rockville, MD 20852
701 Pennsylvania Avenue, NW Suite 800 Washington, D.C. 20004 2654 Tel: 202 783 8700 Fax: 202 783 8750 www.advamed.org May 16, 2014 Division of Dockets Management (HFA-305) Food and Drug Administration
More informationTHE HEPATITIS PATIENT REGISTRY NETWORK [HEPPRN]
THE HEPATITIS PATIENT REGISTRY NETWORK [HEPPRN] ENGAGING INDIVIDUALS FINDING SOLUTIONS SAVING LIVES Hepatitis Foundation International 800-891-0707 www.hepatitisfoundation.org/patientregistry WHO IS THE
More informationNational Alzheimer s & Dementia Patient & Caregiver-powered Research Network (ADPCPRN)- Alzheimer s PPRN
National Alzheimer s & Dementia Patient & Caregiver-powered Research Network (ADPCPRN)- Alzheimer s PPRN Ronald Petersen M.D. PhD. Principal Investigator Alzheimer s PPRN Professor of Neurology, Mayo Clinic
More informationBlood Glucose Monitoring System. Copyright 2016 Ascensia Diabetes Care Holdings AG diabetes.ascensia.com
Viewing test results in My Readings The CONTOUR DIABETES app captures all your blood glucose readings to create personalized patterns and trends, so you can see how your daily activities impact your results.
More informationReducing Lost to Follow Up Percentages In EHDI Programs: The Role of Audiology
Reducing Lost to Follow Up Percentages In EHDI Programs: The Role of Audiology Michael Dybka, Ph.D., CCC-A, FAAA Director Newborn Hearing Screening Program Department of Otolaryngology Audiology Services
More informationHow Doctors Feel About Electronic Health Records. National Physician Poll by The Harris Poll
How Doctors Feel About Electronic Health Records National Physician Poll by The Harris Poll 1 Background, Objectives, and Methodology New research from Stanford Medicine, conducted with The Harris Poll
More informationWebinar Series Its All About the Interac0on Strategies for Pragma2c Organiza2on of Communica2on Systems PART 1
Webinar Series Its All About the Interac0on Strategies for Pragma2c Organiza2on of Communica2on Systems PART 1 Presented by: Jane Goetz, Au2sm Coordinator & Lori Chambers, Regional Systems Coordinator
More informationSportsPass Media Pack Sport Associations & Clubs
SportsPass Media Pack Sport Associations & Clubs Attention: All Sports Executive Officers, Presidents, Secretaries and Committees Contents Media release / introduction to all club and association presidents...
More informationThe NIH Collaboratory Distributed Research Network
The NIH Collaboratory Distributed Research Network Millions of people. Strong collaborations. Privacy first. Steering Committee Meeting February 24, 2014 www.pcori.org/assets/2-collins-slides-network.pdf
More informationNa#onal HPV Vaccina#on Roundtable. Noel Brewer, Chair Debbie Saslow, Vice- Chair
Na#onal HPV Vaccina#on Roundtable Noel Brewer, Chair Debbie Saslow, Vice- Chair Mission The Na'onal HPV Vaccina'on Roundtable is a na'onal coali'on of public, private, and voluntary organiza'ons and invited
More informationPublic engagement of science. ENGAGE, 25 June 2010 Frans van Dam, CSG
Public engagement of science ENGAGE, 25 June 2010 Frans van Dam, CSG Contents My background Introduction: from engagement of publics to engagement of science Case 1: Heel prick scandal (plenary) Case 2:
More informationCiviCRM for Membership Associa?ons
CiviCRM for Membership Associa?ons Lisa Rau/Ashma Shrestha Jason Bertolacci 1 Outline Who Are WE? A Couple Examples of Customiza?on Ques?ons / Discussion 2 Introduc?ons Lisa Rau CEO and co- founder, Confluence
More informationCDRN/PPRN Awardee Welcome Webinar
CDRN/PPRN Awardee Welcome Webinar Webinar Agenda 1. Welcome from PCORI s PCORnet Program Director Rachael Fleurence Description of PCORI team and next steps 2. Welcome from the PCORnet Coordinating Center
More informationORCID. Michelle Bass & Deb Werner. Connecting your publications to your research impact
ORCID Connecting your publications to your research impact Michelle Bass & Deb Werner Science Research Services Librarian, University of Chicago Library Librarian for Science Instruction & Outreach and
More informationPatient and Carer Network. Work Plan
Patient and Carer Network Work Plan 2016 2020 Introduction from our chair When it was established over a decade ago, the RCP s Patient and Carer Network (PCN) led the way in mapping and articulating the
More informationOraSure Technologies. JEFFERIES 2014 GLOBAL HEALTHCARE CONFERENCE June 4, 2014
OraSure Technologies JEFFERIES 2014 GLOBAL HEALTHCARE CONFERENCE June 4, 2014 Forward-Looking Statements These slides and the associated presentation contain certain forward-looking statements, including
More information2018 Warren County Local Assessment (MCH Grant) Summary
2018 Warren County Local Assessment (MCH Grant) Summary Maternal Child Health Population Assessment What we looked at Warren County Data from reliable sources- (Federal, State and Local) Interviews & feedback
More informationInsights from CISCRP s 2017 Percep9ons & Insights Study March 2018
Insights from CISCRP s 2017 Percep9ons & Insights Study March 2018 Summary Overall public and patient attitudes, perceptions and experiences consistent with past studies Probing to identify underlying
More informationUser Story Valter Araujo - Build Your Own SAP Fiori App in the Cloud 2016 Edition Public 1
User Story Every sport s activities involving training when monitored by a coach or physiotherapist can have a better improvement and best results. Triathlon is a sport that requires more than hard work
More informationLoving Support Award of Excellence Gold Award Application Instructions
U.S. Department of Agriculture, Food and Nutrition Service (FNS), Special Supplemental Nutrition Program for Women, Infants and Children (WIC) Gold Award Application Instructions There are 3 Award Levels:
More informationSummary Transforming healthcare for women and newborns
Summary Transforming healthcare for women The Women s Strategic Plan 2016-2020 The Women s Declaration For more than 160 years, the Women s has led the advocacy and advancement of women s health and wellbeing
More informationPatients Driving Progress
Patients Driving Progress Ellen V Sigal, PhD WIN Symposium 2018 June 25, 2018 Paris, France Nothing to disclose The Evolution of Patient Advocacy The Agnew Clinic, Thomas Eakins (1899) Partial mastectomy
More informationVoluntary Medical Male Circumcision in Military Populations: September 2012 Update
Voluntary Medical Male Circumcision in Military Populations: September 2012 Update Anne Goldzier Thomas, Ph.D. US Department of Defense PEPFAR Male Circumcision TWG Johannesburg, South Africa Combina(on
More informationHow Personalized Medicine is Changing the Biopharmaceutical Marketplace
How Personalized Medicine is Changing the Biopharmaceutical Marketplace Marc Chioda, PharmD Associate Medical Director, Pfizer Oncology. Presentation to the Cancer Action Coalition of Virginia January
More informationService Recovery: Everyone s Responsibility
Service Recovery: Everyone s Responsibility Carol Santalucia, MBA Vice President CHAMPS Patient Experience Toronto Boston Adelaide London www.rlsolutions.com About the Webinar Series Free webinars hosted
More informationOverview of Provider and Patient Educational Resources
Overview of Provider and Patient Educational Resources Sonya Norman, PhD Director, PTSD Consulta3on Program, VA Na3onal Center for PTSD Associate Professor of Psychiatry, University of California, San
More informationHUNGER-RELIEF ORGANIZATION TOOLKIT
HUNGER-RELIEF ORGANIZATION TOOLKIT Contents Welcome to the #GiveHealthy Movement! 2 What s your role as a #GiveHealthy organization? 2 Why should your organization join the #GiveHealthy Movement? 2 How
More informationUNCONSCIOUS BIAS What is it? Sponsored by InDemand Interpre1ng
1 UNCONSCIOUS BIAS What is it? 2 Unconscious Bias: What is it? How does it work? By: David B. Hunt, J.D. President and CEO, Cri8cal Measures Awareness: New Research Regarding Bias 3 In the past, bias was
More informationGREAT STRIDES Crea*ng a Culture of Wellness Through Partnerships: Stanford University BeWell Program GREAT STRIDES. Stanford University.
Crea*ng a Culture of Wellness Through Partnerships: Stanford University BeWell Program Jennifer Sexton, MA Director of Recrea,onal Fitness & Wellness Department of Athle,cs, Physical Educa,on & Recrea,on
More informationWorkplace Partnership for Life Hospital Campaign Thursday, December 15 2:00 3:00 p.m. ET Call in: Passcode: WORKPLACE
Workplace Partnership for Life Hospital Campaign Thursday, December 15 2:00 3:00 p.m. ET Call in: 888-989-4618 Passcode: WORKPLACE WPFL Learning Series Opportunity December 15, 2011 Our Agenda Welcome
More informationAscendant Dx mission is to commercialize disruptive diagnostic technologies aiding diagnosis and treatment for diseases of women and children.
Ascendant Dx mission is to commercialize disruptive diagnostic technologies aiding diagnosis and treatment for diseases of women and children. Our particular focus is on cancer, autoimmune diseases and
More informationSubmitted to the House Energy and Commerce Committee. Federal Efforts to Combat the Opioid Crisis
STATEMENT FOR THE RECORD Submitted to the House Energy and Commerce Committee Federal Efforts to Combat the Opioid Crisis October 25, 2017 America s Health Insurance Plans 601 Pennsylvania Avenue, NW Suite
More informationBusiness Partner Program WELCOME. Thank you for your interest and support of the Denver legal community!
2019-2020 Business Partner Program WELCOME Thank you for your interest and support of the Denver legal community! OVERVIEW OF Mile High Chapter Business Partners receive benefits based on their level of
More informationJOIN US TO INTEGRATE CLINICAL RESEARCH AND HEALTH CARE
JOIN US TO INTEGRATE CLINICAL RESEARCH AND HEALTH CARE #BridgeTheGap April 4-5, 2018 National Harbor, MD bridgingclinical.com LET'S BUILD A BRIDGE Work with us to bridge the gap between clinical research
More informationDRAFT UNICEF PROCUREMENT OF HIV/AIDS-RELATED SUPPLIES AND SERVICES
DRAFT UNICEF PROCUREMENT OF HIV/AIDS-RELATED SUPPLIES AND SERVICES April 2005 Summary: Millions of children in developing countries are affected by the HIV/AIDS pandemic. Despite significant international
More informationAHIP Webinar: Top Tips for a Successful National Diabetes Prevention Program
AHIP Webinar: Top Tips for a Successful National Diabetes Prevention Program September 20, 2016 2:00 3:00 PM EST Project funding supported through a cooperative agreement with the CDC #5US8DP004157 Welcome
More informationAnchor Job Openings March 9, 2018
Anchor Job Openings March 9, 2018 Peer Recovery Support Specialist / DOC Provide peer recovery coaching support and recovery classes for men in the Adult Correctional Facilities. Works collaboratively
More informationKofax VRS. Installation Guide
Kofax VRS Installation Guide 2013-06-27 1999-2013 Kofax, Inc., 15211 Laguna Canyon Road, Irvine, California 92618, U.S.A. All rights reserved. Use is subject to license terms. Third-party software is copyrighted
More informationProstate Cancer Clinical Trials - PHEN s Rally Update and Next Steps
Prostate Cancer Clinical Trials - PHEN s Rally Update and Next Steps 13 th Annual African- American Prostate Cancer Disparity Summit PHEN: Prostate Health Educa?on Network Bernard W. Parker MD, FACP CAPT,
More informationQA in Predic+ve Molecular Pathology. Anders Edsjö Uppsala
QA in Predic+ve Molecular Pathology Anders Edsjö Uppsala 2012-09- 25 QA in Predic+ve Molecular Pathology Why? What? How? Results Future? Predic+ve Molecular Pathology Predictive Molecular Pathology - Need
More informationEli Lilly and Company Tailored Therapeutics and Diagnostics
Eli Lilly and Company Tailored Therapeutics and Diagnostics The views and opinions expressed herein and/or during the accompanying discussion are those of the author and do not necessarily represent the
More informationDAY ONE: March 28, 2016
Building Trustworthiness in PCORnet March 28-29, 2016 Washington D.C. [Venue TBD] Workshop Objectives: Describe the characteristics of trustworthy engagement Examine successes and failures in building
More informationPPRN EHR-Extraction Project: Reflections and Projections. Dixie Baker Kiely Law Michelle Denburg Megan O Boyle
PPRN EHR-Extraction Project: Reflections and Projections Dixie Baker Kiely Law Michelle Denburg Megan O Boyle 1 Agenda Project Overview Results What the Numbers Tell Us Recommendations PPRNs Looking Forward
More informationBuilding a Digital Home to Provide Patient Support, Education and Clinical Trial Awareness
Building a Digital Home to Provide Patient Support, Education and Clinical Trial Awareness unlocking the potential of multi-stakeholder communities and the families it serves Rare Drug Development and
More informationThank you for joining our session. The presentation will begin momentarily.
Thank you for joining our session. The presentation will begin momentarily. 1 BORN Provincial Rounds: OMama Project Mobile Health Innovation for Maternity Care January 15, 2015 Agenda Intro to the OMama
More informationGlobal Network Self-Audit Tool and Planning Template
STANDARD 1: Governance and commitment The healthcare organisation has clear and strong leadership to systematically implement a tobacco-free policy 1.1 The healthcare organisation has clear policy documents
More informationMedia Kit. acdis.org
Media Kit acdis.org I have been doing this [CDI] program for over five years, wondering if anyone else out there struggled with finding information on asking queries, physician education, how to capture
More informationCollabora'on to Prevent and Control Cervical Cancer in La'n America and the Caribbean
Collabora'on to Prevent and Control Cervical Cancer in La'n America and the Caribbean Partnership between PAHO- USG- ACS- RINC Mona Saraiya, MD, MPH CDC Associate Director for Interna@onal Cancer Control
More informationHow can a social robot may be integrated into therapeu6c interven6ons with children with ASD as a support tool to engage children in turn taking
How can a social robot may be integrated into therapeu6c interven6ons with children with ASD as a support tool to engage children in turn taking ac6vi6es? 2 Children with ASD showed to have a special interest
More informationmehealth for ADHD Parent Manual
mehealth for ADHD adhd.mehealthom.com mehealth for ADHD Parent Manual al Version 1.0 Revised 11/05/2008 mehealth for ADHD is a team-oriented approach where parents and teachers assist healthcare providers
More informationIMPROVE CLINICAL TRIAL OUTCOMES BY BOOSTING PATIENT EXPERIENCE
SMARTER DRUG DEVELOPMENT IMPROVE CLINICAL TRIAL OUTCOMES BY BOOSTING PATIENT EXPERIENCE Shifting from Subjects to Customers We are in the Experience Era. Consumers are drawn to organizations that consistently
More informationThe Six Ws of DNA testing A scenario-based activity introducing medical applications of DNA testing
The Six Ws of DNA testing A scenario-based activity introducing medical applications of DNA testing Overview This activity introduces a number of different ways that genetic tests can be used in medicine.
More informationJosep M Borras WP7 Health Care University of Barcelona and Spanish Cancer Strategy Brussels, June 23, 2014
THE IMPORTANCE OF SHARING EXPERTISE AND THE CHALLENGE TO MANAGE THE EXCHANGE OF KNOWLEDGE IN HIGHLY SPECIALISED HEALTH CARE: a perspec(ve from the European Partnership Ac(on Against Cancer (EPAAC) Josep
More informationEngage and Empower Pa.ents with Interac.ve Technology. Northeast NAHAM Regional Conference Pa.ent Access: GeBng It Right Upfront October 22-23, 2012
Engage and Empower Pa.ents with Interac.ve Technology Northeast NAHAM Regional Conference Pa.ent Access: GeBng It Right Upfront October 22-23, 2012 NAHAM - Pa.ent Access Services 2 Pa%ent Access Services
More informationMedical Devices - Reporting to MHRA.. Emma Rooke, December 2015
Medical Devices - Reporting to MHRA. Emma Rooke, December 2015 Topics to be covered today: The MHRA and what we do What is a Medical Device? Adverse Incidents Reporting adverse incidents to the MHRA The
More informationPROPOSED WORK PROGRAMME FOR THE CLEARING-HOUSE MECHANISM IN SUPPORT OF THE STRATEGIC PLAN FOR BIODIVERSITY Note by the Executive Secretary
CBD Distr. GENERAL UNEP/CBD/COP/11/31 30 July 2012 ORIGINAL: ENGLISH CONFERENCE OF THE PARTIES TO THE CONVENTION ON BIOLOGICAL DIVERSITY Eleventh meeting Hyderabad, India, 8 19 October 2012 Item 3.2 of
More informationGET CONNECTED... CELEBRATE BRAIN AWARENESS WEEK! Visit to get started.
GET CONNECTED... CELEBRATE BRAIN AWARENESS WEEK! Visit www.dana.org/baw to get started. WHAT IS BRAIN AWARENESS WEEK? Brain Awareness Week (BAW) is the global campaign to increase public awareness of
More informationehealth (Telemedicine) and concepts of virtual clinical trials Prof. Dr. med. Siegfried Jedamzik Berlin, 09. November 2017
ehealth (Telemedicine) and concepts of virtual clinical trials Prof. Dr. med. Siegfried Jedamzik Berlin, 09. November 2017 Agenda Number Titel 1.0 Introduction Bayerische TelemedAllianz (BTA) 2.0 Telemedicine
More informationPARENT ADVOCACY GROUPS:
PARENT ADVOCACY GROUPS: A BRIEF SUMMARY Susan L. Weiner, PhD President and Founder Children s Cause for Cancer Advocacy December 12, 2012 Basic Premises of Parent Advocacy I. Advocacy Activities Service
More information2/17/2018. Prof. Steven S. Saliterman Department of Biomedical Engineering, University of Minnesota
Department of Biomedical Engineering, University of Minnesota http://saliterman.umn.edu/ FDA Authority Medical Device Act of 1976 FDA Modernization Act of 1997 Federal Food, Drug and Cosmetic Act (FFDCA)
More informationProf. Steven S. Saliterman. Department of Biomedical Engineering, University of Minnesota
Department of Biomedical Engineering, University of Minnesota http://saliterman.umn.edu/ FDA Authority Medical Device Act of 1976 FDA Modernization Act of 1997 Federal Food, Drug and Cosmetic Act (FFDCA)
More informationI, Mary M. Langman, Director, Information Issues and Policy, Medical Library Association
I, Mary M. Langman, Director, Information Issues and Policy, Medical Library Association (MLA), submit this statement on behalf of MLA and the Association of Academic Health Sciences Libraries (AAHSL).
More informationConnections. Academic and Community Cancer Research United (ACCRU) continues to expand our portfolio of cancer treatment
Connections Vol. 7 No. 1 Spring 2017 Inside this issue Meeting news...2 Spring ACCRU Scientific Program Overview ACCRU to exhibit at ASCO 2017 Membership news...2 Top accruing members ACCRU welcomes new
More informationA Comprehensive Guide for 2017 SPONSORSHIP & UNDERWRITING Programs and Services
A Comprehensive Guide for 2017 SPONSORSHIP & UNDERWRITING Programs and Services Sponsorship and Underwriting Programs and Services Mission to Care. Vision to Lead. There is no organization better positioned
More informationA Coordinated Registry Network Based on the Vascular Quality Initiative: VISION. Vascular Implant Surveillance & Interventional Outcomes Network
A Coordinated Registry Network Based on the Vascular Quality Initiative: VISION Vascular Implant Surveillance & Interventional Outcomes Network Philip P. Goodney, MD, MS Chair, Research Advisory Committee
More informationServices and Support Information Leaflet
Services and Support Information Leaflet Services Free HIV and STI Testing Free HIV and STI testing takes place in HIV Ireland on the second and fourth Wednesdays of every month ( exclusive of holidays
More informationRegistry Assessment of Peripheral Interventional Devices (RAPID)
Registry Assessment of Peripheral Interventional Devices (RAPID) Adding Data Sources May 2, 2018 W. Schuyler Jones, MD Duke Clinical Research Institute Duke Heart Center Disclosures Research Grants: Agency
More informationCommunity of Practice Trauma Informed Care. Sydney Women s Homelessness Alliance
Community of Practice Trauma Informed Care Sydney Women s Homelessness Alliance Sydney Women s Homelessness Alliance Based in Inner City Sydney Interagency group for services supporting women experiencing
More informationGood practices of maternal and child health section for reducing and eliminating maternal mortality and morbidity
Good practices of maternal and child health section for reducing and eliminating maternal mortality and morbidity Introduction In Myanmar, mothers and children constitutes 60% of total population. Government
More informationINTRODUCTION. 204 MCHIP End-of-Project Report
Redacted INTRODUCTION Three randomized clinical trials determined unequivocally that male circumcision (MC) reduces female-to-male HIV transmission by approximately 60%. 1,2,3 Modeling studies demonstrate
More informationElsevier ClinicalKey TM FAQs
Elsevier ClinicalKey FAQs Table of Contents What is ClinicalKey? Where can I access ClinicalKey? What medical specialties are covered in ClinicalKey? What information is available through ClinicalKey?
More information4/15/16. Exercise is the Gateway to Build Self- Esteem, Rela?onships and Well- Being. David S. Geslak, BS, ACSM EP- C, CSCS. Founder & President
Exercise is the Gateway to Build Self- Esteem, Rela?onships and Well- Being David S. Geslak, BS, ACSM EP- C, CSCS Founder & President Para- educator & Fitness Coordinator Co- Founder & President Bachelors
More informationMonthly Campaign Webinar. May 19, 2016
Monthly Campaign Webinar May 19, 2016 WEBINAR REMINDERS Webinar will be recorded today and available the week of May 23 rd Together2Goal.org Website (Improve Patient Outcomes Webinars) Email distribution
More informationGSI AUDIOscreener OAE AND ABR HEARING SCREENING
GSI AUDIOscreener OAE AND ABR HEARING SCREENING + Setting The Clinical Standard GSI AUDIOscreener OAE AND ABR HEARING SCREENING + The Problem Hearing loss is the most common birth defect in the United
More informationMedia Contact: Ron Rogers Investor Contact: Scott Gleason (801) (801)
News Release Media Contact: Ron Rogers Investor Contact: Scott Gleason (801) 584-3065 (801) 584-1143 rrogers@myriad.com sgleason@myriad.com Myriad Receives FDA Approval of BRACAnalysis CDx as Companion
More informationDistress Screening: Essential Quality Care
Distress Screening: Essential Quality Care Patient Quality of Life Coalition Vicki Kennedy, LCSW October 15, 2014 vicki@cancersupportcommunity.org 1 Cancer Support Community 2 Cancer Support Community
More informationIt brought many changes: Milwaukee
Holistic Healing Activities Holistic Healing Activities Supervision with Dr. Shervington Denise Shervington MD, MPH Founder, President & CEO The Institute of Women and Ethnic Studies Forensic Medical Services
More informationThe Bio-PIN: J.J. Nietfeld, PhD UMC Utrecht. Prof. J.-E. Litton, PhD. A tool that can solve biobanking problems INTRESCO. J.J.
The Bio-PIN: A tool that can solve biobanking problems J.J. Nietfeld, PhD UMC Utrecht INTRESCO Prof. J.-E. Litton, PhD J.J.Nietfeld 1 Content 1. Introduction 2. Biobanking problems + Bio-PIN solutions
More informationWhere Sites, Sponsors & CROs Partner for Success
Where Sites, Sponsors & CROs Partner for Success October 8-11, 2015 Amelia Island, FL The Global Site Solutions Summit brings together research site executives and industry leaders for powerful collaboration
More informationSCAN Sponsorship Opportunities
2018-2019 SCAN Sponsorship Opportunities www.scandpg.org www.development@scandpg.org With more than 6,500 members, SCAN is the LARGEST dietetic practice group of the Academy of Nutrition and Dietetics.
More informationNutrigenetics and Nutrigenomics in Clinical Research and Practice
Nutrigenetics and Nutrigenomics in Clinical Research and Practice Mar$n Kohlmeier, MD, PhD University of North Carolina at Chapel Hill Department of Nutri7on and UNC Nutri7on Research Ins7tute mkohlmeier@unc.edu
More informationEffec&ve Messaging for Suicide Preven&on:
Effec&ve Messaging for Suicide Preven&on: Anara Guard anara@suicideispreventable.org Lessons from a statewide campaign and from a na&onal framework This morning The Know the Signs statewide social marke&ng
More information