RARE BEST PRACTICES COURSE ROMA (Feb 23-24 2015) Euro-HSP Madrid 2015 May 30 Jean Bénard May 31, GA 2015 Madrid.

Slides:

Advertisements

Similar presentations

Environment case Episode 3 - CAATS II Final Dissemination Event Brussels, 13 & 14 Oct 2009 Hellen Foster, Jarlath Molloy NATS, Imperial College London.

Advertisements

Patient Safety Conference National Clinical Effectiveness Committee

European Partnership for Action Against Cancer (EPAAC)

Standards and Guidelines in EU countries EQUS Conference, Brussels, 2011 Roland Simon, Marica Ferri, EMCDDA.

99.98% of the time patients are on their own “The diabetes self-management regimen is one of the most challenging of any for chronic illness.” 0.02% of.

Public Health Perspective on Radon Control in Ireland Dr. Ina Kelly Specialist Registrar in Public Health Medicine Health Service Executive Department.

Evidence for ‘excellence in care’

Stroke Care in Europe L. Garcia-Castrillo, MD, SEMES Department of Emergency Medicine University Hospital Marques de Valdecilla Cantabria, Spain.

Migrant Worker Health DG SANCO May 20th Project Development by Prolepsis  The Institute of Preventive Medicine, Environmental and Occupational.

Therapeutic exercise foundation and techniques Therapeutic exercise foundation and concepts Part II.

1 Measuring health care quality at the international level: Introduction to the OECD Health Care Quality Indicators Project Peter Scherer Head, Health.

Rare Diseases Working Group Luzern, 24 September 2010.

Clinical Practice Guidelines

From Evidence to EMS Practice: Building the National Model Eddy Lang, MD, CFPC (EM), CSPQ SMBD-Jewish General Hospital, McGill University Montreal, Canada.

Critical Appraisal of Clinical Practice Guidelines

Information network on rare cancers RARECARENet Annalisa Trama, Gemma Gatta Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)

Criteria and Standard.

1 EUROPA DONNA – The European Breast Cancer Coalition Susan Knox, Executive Director KEEPING BREAST CANCER ON THE EUROPEAN HEALTH AGENDA.

Copyright © 2011, 2007 by Mosby, Inc., an affiliate of Elsevier Inc. 1 Contemporary Nursing Practice Chapter 1 Overview.

Whilst the pharmaceutical industry plays a key role in developing and producing medicines, there is a tension between industry’s need to expand product.

Thank you for viewing this presentation. We would like to remind you that this material is the property of the author. It is provided to you by the ERS.

Criteria for Centres of Expertise for Rare Diseases in the EU following EUCERD Recommendations RARECARENet Project: Consensus meeting on.

High Resolution Studies within the European Cancer Information System Cooperation with EPAAC Riccardo Capocaccia Istituto Superiore di Sanità (ISS), Italy.

Evidence based implementation for quality and health promotion in hospitals Professor Jos Kleijnen Director Centre for Reviews and Dissemination University.

King Saud university Collage of nursing Master program Nursing administration Special Problems in Clinical Specialization (NUR 574 ) Prepared.

European Council of Optometry & Optics Julie-Anne Little President VISION To improve vision and eye health by providing high-quality, cost-effective optometric.

Why value “measurement” is critical to the future of the meetings industry development Isabel Bardinet, CEO ESC JMIC, Paris, May 2015.

EURO-HSP General Assembly and Annual Meeting May 31 – June 1, 2015 Madrid, Spain Euro-HSP - GA May 31 / June 1 - Madrid, Spain 1.

Applicability of the AGREE II Instrument in Evaluating the Development Process and Quality of Current National Academy of Clinical Biochemistry Guidelines.

Research Techniques Made Simple: Evaluating the Strength of Clinical Recommendations in the Medical Literature: GRADE, SORT, and AGREE Mayra Buainain de.

OPERATIONAL GUIDELINES Ensuring Ownership of PARSEL by Partners.

Clinical trials in Framework programme 7 (FP7) EU Judita Kinkorová 2. Národní konference o doporučených postupech, Olomouc 13. listopadu 2010.

TEACH LEVEL II: CLINICAL POLICIES AND GUIDELINES STREAM Craig A Umscheid, MD, MSCE, FACP Assistant Professor of Medicine and Epidemiology Director, Center.

First ARGOS Workshop First ARGOS WORKSHOP (Barcelona, March 15, 2010) EHR Certification in EU Georges De Moor This project is funded.

Recommendation 2001/331/EC: Review and relation to sectoral inspection requirements Miroslav Angelov European Commission DG Environment, Unit A 1 Enforcement,

BMH CLINICAL GUIDELINES IN EUROPE. OUTLINE Background to the project Objectives The AGREE Instrument: validation process and results Outcomes.

NICE - in evidence based commissioning Gateshead Council Gillian Mathews, Implementation Consultant - North 9 September 2011.

PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE PCORI Board of Governors Meeting Washington, DC September 24, 2012 Anne Beal, MD, MPH, Chief Operating Officer.

CHAPTER 28 Translation of Evidence into Nursing Practice: Evidence, Clinical practice guidelines and Automated Implementation Tools.

DETERMINE Working document # 4 'Economic arguments for addressing social determinants of health inequalities' December 2009 Owen Metcalfe & Teresa Lavin.

Appraisal of Guidelines for Research & Evaluation Using the AGREE¹ Instrument CAN-IMPLEMENT Toolkit Version 1.0 April 2010 Modified from:

Clinical Practice Guidelines By Dr. Hanan Said Ali.

Introduction to Healthcare and Public Health in the US The Evolution and Reform of Healthcare in the US Lecture b This material (Comp1_Unit9b) was developed.

Adapting Guidelines for Local Implementation: Fusion Cuisine or Fast Food Leftovers Eddy Lang MDCM CCFP(EM) Head Department of Emergency Medicine Senior.

Developing evidence-based guidelines at WHO. Evidence-based guidelines at WHO | January 17, |2 |

Knowledge Translation for Improving Health Masoud Solaymani-Dodaran MD MPH PhD FFPH CCT.

4th International Congress on Endometriosis Roma May 2009 Are Endometriosis Guidelines following the Guidelines? Judy Birch Pelvic Pain Support Network.

Guidelines Recommandations. Role Ideal mediator for bridging between research findings and actual clinical practice Ideal tool for professionals, managers,

Emma Dunn. Presentation outline  Project Background  Project Aims  Work Completed  Key Findings and Recommendations  Questions?

Emergency Health Services Translating Research Into Practice Andrew Travers MD MSc FRCPC Staff Physician, QE-II Emergency Provincial Medical Director Emergency.

European Patients’ Academy on Therapeutic Innovation Ethical and practical challenges of organising clinical trials in small populations.

GENOMICS TO COMBAT RESISTANCE AGAINST ANTIBIOTICS IN COMMUNITY-ACQUIRED LRTI IN EUROPE (GRACE) H. Goossens (Coordinator), K. Loens (Manager), M. Ieven.

Measurements and indicators for healthcare IT

RECOMMENDATIONS for the clinical implementation of the Narrative Based Medicine in the care of people with rare and chronic diseases Amalia Egle GENTILE,

Research for Patient Benefit Preparing a research proposal What makes a good proposal? Professor Scott Weich, Panel Chair.

Kerstin Ödman Chair of the Strategy Working Group Ad hoc NDPHS Strategy Working Group Report for the NDPHS committee of Senior Representatives Riga,

Health Technology Assessment Methodology, an EUnetHTA View Basics for the Assessment in EU Countries PharmDr. Martin Visnansky, MBA, PhD., MSc. (HTA) HTA.

Early DETECTion and integrated management of TuBerculosis in europe: E-DETECT TB Professor Ibrahim Abubakar Director, Institute for Global Health University.

European network for Health Technology Assessment | JA | EUnetHTA European network for Health Technology Assessment THL Info.

A POCKET GUIDE TO PUBLIC SPEAKING 4 TH EDITION Chapter 36 Nursing and Allied Health Courses.

Approach to guideline development

European-Comparative Effectiveness Research on online Depression Treatment E-COMPARED is funded by the European Community’s Seventh Framework.

Musculoskeletal Health in Europe

Clinical practice guidelines and Clinical audit

Born too soon Worldwide, every year 15 million babies are born too soon (= before week 37 of pregnancy), that is more than 1 baby in 10 ≈ very.

Grampian COPD MCN Delivering Spirometry in a Community Pharmacy setting, a rural solution? Small I (1,2), Clelland J (1,2), Robertson W (1), Freeman D.

Digital Health Literacy: A brief overview of the IC-Health project

Component 1: Introduction to Health Care and Public Health in the U.S.

MULTIDISCIPLINARY (MDT) APPROACH TO CLINICAL CARE MODEL FOR EFFECTIVE AND BEST EVIDENCE PATIENT CARE DR EZEKIEL ALAWALE MBBS, FWACS, FRCS(I), JCPTGP, GP.

From the Evidence Analysis to the Creation of Evidence Based Guidelines 1.

Presentation transcript:

RARE BEST PRACTICES COURSE ROMA (Feb ) Euro-HSP Madrid 2015 May 30 Jean Bénard May 31, GA 2015 Madrid

Deals with RD as a global health issue,  Deals with RD as a global health issue,  Exploiting and integrating contributions from all EU Members and other world areas (Caucasus, Europe, America, Oceania, PAHO/WHO)  Will identify additional research needs to further improve clinical practice. Euro-HSP RARE BEST PRACTICES( RBP) Platform

 Aims at improving clinical management of rare disease patients and narrowing the existing gap in quality of health care among EU member states as well as in other countries.  This will be achieved by collecting, evaluating and disseminating best practices as well as sharing knowledge.  The ultimate impact of the RARE-Bestpractices project should be an improvement of health outcomes and quality of life for rare diseases patients, through a reduction of inequalities in health care and an increased equity of access to better diagnostics and therapeutics at EU level. Euro-HSP RARE BEST PRACTICE (RBP) Project

Document with recommendations, aimed to improve the quality of health, based on systematic reviews of scientific studies combined with a consideration of harms and benefits of different care options  Document with recommendations, aimed to improve the quality of health, based on systematic reviews of scientific studies combined with a consideration of harms and benefits of different care options  Supplemented with expertise and experience from care providers and care users.  Dutch guideline for guidelines, 2012, based on IOM Euro-HSP RARE BEST PRACTICE (RBP) Guideline

An algorithm integrating numerous criteria has been built that yields a chek-list enabling to appraise a document proposed as a guideline Domain 1: Scope and Purpose Domain 2: Stakeholder Involvement Domain 3: Rigour of Development Domain 4. Clarity of Presentation Domain 5.Applicability Domain 6: Editorial Independence Overall Guideline Assessment RARE BEST PRACTICE (RBP) Agree II Instrument

EFNS guidelines on the Molecular Diagnosis EFNS guidelines on the Molecular Diagnosis of Ataxias and Spastic Paraplegias of Ataxias and Spastic Paraplegias T. Gassera et al. European Journal of Neurology 2010, 17: 179–188 based on the expertise of Physiotherapists of all Europe: Austria, Belgium, France, Hungary, Israël, Italy, Norway, UK, Switzerland RARE BEST PRACTICE (RBP)

 This guidance is targeted at paediatric physiotherapists involved in the management of children with neurological conditions where botulinum toxin (BTX-A) may be an appropriate adjunctive treatment.  To date there are no standardised pathways or consensus of practice for providing BTX-A injection services for children. Current provision and practice varies from one locality to another throughout the UK.  Nationally, paediatric physiotherapists have expressed a need for evidence/consensus-based guidance as there is little specific advice regarding physiotherapy intervention following BTX-A treatment. EVIDENCE-BASED GUIDANCE FOR PHYSIOTHERAPISTS The use of Botulinum Toxin in Children with Neurological Conditions RARE BEST PRACTICE (RBP)