How to Form a Research Question. Insight CF Registry Research Project
|
|
|
- Lester Roberts
- 6 years ago
- Views:
Transcription
1 How to Form a Research Question Insight CF Registry Research Project
2 Insight CF Registry Research Project Thank you for your interest in the Insight CF Registry Research Project. The goal of this training is to help you develop a research question to submit for the project through the form at This training covers: The process of scientific research How to come up with ideas for research How to turn an idea into a research question The four elements of a research question: What? How? Who? Why?
3 How Does the Research Process Work? Form a Research Question Specifies the knowledge to be gained from the research study Addresses information missing from previous research Disseminate Results Shares the study findings, acknowledging the study s strengths and limitations Findings may lead to further questions continuing the cycle Design the Study Outlines the protocol and procedures for the study Describes the analytic techniques to allow valid interpretations of the results Implement the Study Collect data Conduct data analysis Ultimately, Insight CF will include all phases of research. We are starting with research questions.
4 Formulating a Research Question Why? What? How? Who?
5 How Do I Come Up With a Research Idea? Research ideas are all around us. They are the things you wonder as you live your life with CF: Consider times when you needed to make a decision and wanted more information to help you make that decision. Consider information you heard or read and wondered if it was accurate. Consider differences between people you know with CF and wondered why their CF was different. Would moving to a different climate affect my health? I wonder Should I consider adding a medication? Does my mental health affect my physical health?
6 Turning Your Idea Into a Research Question Not all ideas or questions are research questions. Research questions: Involve the comparison of two groups of people Have an answer that is a measure of the magnitude of the difference between the two groups of people Here is an example of the difference between a regular question and a research question: How many people with CF have CF-related diabetes (CFRD)? Do individuals with CFRD have worse lung function than those without CFRD?
7 A Research Question Has Four Elements WHAT are the groups of people that will be compared? HOW would I measure differences between these groups? WHO will be included in the study? WHY is this important?
8 What? The first thing we must establish for our research question is what are the groups of people that will be compared? Most any group of people can be compared with another group. It is important that these two groups of people are different in at least one obvious way Examples of groups to compare: Males and females Individuals diagnosed with CF in the first year of life compared to individuals diagnosed after their first birthday Infants with meconium ileus at birth compared to infants without meconium ileus Children who are underweight for their age compared to children with average weight for their age Adults aged in college compared to those not in college Individuals who cultured positive for nontuberculous mycobacteria compare to those with a negative culture Individuals taking an antibiotic compared to those not taking that antibiotic 1.
9 How? The second component is how to measure the difference you suggest we measure. This tells us how we know if there is a difference between the two groups of people. Examples could include comparing two groups to examine differences in the: Average FEV 1 % predicted Average number of centimeters that children grew Percentage of individuals who develop a new infection with Burkholderia cepacia Percentage of individuals who received a feeding tube Percentage of individuals who screen positive for anxiety Percentage of individuals who survived Percentage of women who report pregnancies 2.
10 Who? Depending on the study, it may not make sense to include the entire Registry population. Once you have selected your two distinct groups, you may consider narrowing who belongs in those groups based on the following factors. You may narrow the population in your groups based on: Time: You may want to examine an effect in the recent past, or you may want to examine populations before or after an event in the history of CF care. For example, research could study groups before or after there was universal newborn screening or before orafter a CF medication became available. Age: Some studies may relate only to infants, adolescents or adults. For studies that examine lung function, research must start with children age 6, because lung function measurements are not recorded beforehand. Sex: You may want to include only males or females for biological, psychological or sociological reasons. 3. Individuals who already have the outcome: For example, if your study is measuring the number of people who need transplants then you would need to exclude individuals who already had a transplant from the study.
11 Why? On the question submission form, you are asked, Why is this study important to you, and why do you think it is important for the wider CF community? This is your opportunity to build your case for the importance of your questions to the CF community. Points to consider: What are the implications to the CF community of not having this question answered? How many people in the CF community would benefit from an answer? 4. What is the potential impact of knowing the answer to your research question?
12 Example Research Questions Among individuals with an FEV 1 % predicted less than 40%, do those referred for transplant differ from those not referred with regard to HOW? type of health insurance and distance from their home to a transplant center? HOW? Does the percentage of individuals with Pseudomonas aeruginosa infections differ between children aged 6 to 18 living in the northeastern, southern, midwestern and western regions of the U.S.? Ramos, K.J. et al. J Cyst Fibros 15 (2016): Kopp, B.T et al. J Pediatr :246-52
13 Thank you! We appreciate your time and interest in the Insight CF Registry Research Project, and look forward to receiving your research questions. To see how the submitted questions will be reviewed and learn about the next steps, please go to For questions and feedback, please contact:
Chronic Stenotrophomonas maltophilia infection and mortality or lung transplantation in cystic fibrosis patients
Journal of Cystic Fibrosis 12 (2013) 482 486 www.elsevier.com/locate/jcf Original Article Chronic Stenotrophomonas maltophilia infection and mortality or lung transplantation in cystic fibrosis patients
UK Cystic Fibrosis Registry
UK Cystic Fibrosis Registry Annual Data Report 2017 Scotland UK Cystic Fibrosis Registry 2017 Annual Data Report - Scotland Report prepared by Andrew Lee Statistician Cystic Fibrosis Trust Susan Charman
Cystic Fibrosis Complications ANDRES ZIRLINGER, MD STANFORD UNIVERSITY MEDICAL CENTER MARCH 3, 2012
Cystic Fibrosis Complications ANDRES ZIRLINGER, MD STANFORD UNIVERSITY MEDICAL CENTER MARCH 3, 2012 INTRODUCTION PNEUMOTHORAX HEMOPTYSIS RESPIRATORY FAILURE Cystic Fibrosis Autosomal Recessive Genetically
UK Cystic Fibrosis Registry. Annual Data Report 2017
UK Cystic Fibrosis Registry Annual Data Report 2017 Published August 2018 UK Cystic Fibrosis Registry 2017 Annual Data Report An at-a-glance version of this report can be found at cysticfibrosis.org.uk/registryreports
Cystic Fibrosis 8/23/2014 GROWTH DEFICIENCY IN CYSTIC FIBROSIS IS
8/23/214 GROWTH DEFICIENCY IN CYSTIC FIBROSIS IS OBSERVABLE AT BIRTH AND PREDICTIVE OF EARLY PULMONARY FUNCTION by Rebecca Joan Nelson Case Western Reserve University Cleveland, Ohio Thesis Advisor: Rebecca
TIMELINESS IN NEWBORN SCREENING: CONSIDERATIONS FOR CYSTIC FIBROSIS
TIMELINESS IN NEWBORN SCREENING: CONSIDERATIONS FOR CYSTIC FIBROSIS Susanna A. McColley, MD Northwestern University Feinberg School of Medicine Ann & Robert H. Lurie Children s Hospital of Chicago Stanley
UK Cystic Fibrosis Registry Annual Data Report
UK Cystic Fibrosis Registry 2015 Annual Data Report Published August 2016 UK Cystic Fibrosis Registry 2015 Annual Data Report An at-a-glance version of this report can be found at www.cysticfibrosis.org.uk/registryreports
Glossary. Acronyms used in cystic fibrosis peer review reports
Glossary Acronyms used in cystic fibrosis peer review reports Acronym Definition Notes AC(T) Airway clearance (techniques) A term used in physiotherapy ACB Association of Clinical Biochemists Professional
REGISTRY ANNUAL DATA REPORT
216 PAT I E N T REGISTRY ANNUAL DATA REPORT MISSION OF THE CYSTIC FIBROSIS FOUNDATION The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease
UK Cystic Fibrosis Registry
UK Cystic Fibrosis Registry 2015 Annual Data Report UK Cystic Fibrosis Registry 2015 Annual Data Report An at-a-glance version of this report can be found at www.cysticfibrosis.org.uk/registryreports
Canadian Cystic Fibrosis Registry
212 Annual Report The Canadian Cystic Fibrosis Registry Cystic Fibrosis Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system
Pediatrics Grand Rounds 13 November University of Texas Health Science Center at San Antonio. Learning Objectives
Nationwide Newborn Screening for Cystic Fibrosis: Finally Creating an Opportunity for All Patients to Have Better Outcomes Philip M Farrell, MD, PhD* University of Wisconsin-Madison *No disclosures other
Dutch Cystic Fibrosis Registy
Dutch Cystic Fibrosis Registy Report 2016 NCFS October 2017 Copyright NCFS 2017 The information from this report can be used for publications and presentations, but only with a reference to the source:
Key Points: References: Canadian data from the Canadian Cystic Fibrosis Registry 2015 Annual Report normal
1 2 3 Cystic fibrosis is a rare life-long genetic disease that affects approximately 4,000 people in Canada and about 70,000 worldwide regardless of race or ethnicity but is more common in Caucasians 1,2
Cystic Fibrosis. Jennifer McDaniel, BS, RRT-NPS
Cystic Fibrosis Jennifer McDaniel, BS, RRT-NPS Overview Cystic fibrosis is the most common fatal, inherited disease in the U. S. CF results from a defective autosomal recessive gene One copy of gene =
CYSTIC FIBROSIS REGISTRY
THE CANADIAN CYSTIC FIBROSIS REGISTRY 16 ANNUAL DATA REPORT Canadian Cystic Fibrosis Registry 16 Annual Data Report 1 CYSTIC FIBROSIS Cystic fibrosis (CF) is a rare disease affecting over 4, Canadians
A contemporary survival analysis of individuals with cystic fibrosis: a cohort study
ORIGINAL ARTICLE CYSTIC FIBROSIS A contemporary survival analysis of individuals with cystic fibrosis: a cohort study Anne L. Stephenson 1 4, Melissa Tom 2, Yves Berthiaume 5, Lianne G. Singer 4,6, Shawn
THE CANADIAN CYSTIC FIBROSIS REGISTRY
THE CANADIAN CYSTIC FIBROSIS REGISTRY 17 ANNUAL DATA REPORT CYSTIC FIBROSIS Cystic fibrosis (CF) is a rare disease affecting over 4, Canadians or roughly 1 in 3, live births. CF is a progressive, degenerative
Longitudinal impact of demographic and clinical variables on Health Related Quality of Life in Cystic Fibrosis
Article Longitudinal impact of demographic and clinical variables on Health Related Quality of Life in Cystic Fibrosis Abbott, Janice, Morton, Alison, Hurley, Margaret Anne and Conway, Steven Available
UK Cystic Fibrosis Registry
UK Cystic Fibrosis Registry 2016 Annual Data Report Scotland UK Cystic Fibrosis Registry 2016 Annual Data Report An at-a-glance version of this report can be found at www.cysticfibrosis.org.uk/registryreports
The Future of CF Therapy
The Future of CF Therapy Peter J. Mogayzel, Jr., M.D., Ph.D. Eudowood Division of Pediatric Respiratory Sciences The Johns Hopkins School of Medicine Overview The Future of CF Therapy Personalized therapy
Development of novel inhaled antibiotic regimens in patients with cystic fibrosis (CF) and patients with non-cf bronchiectasis (BE)
Development of novel inhaled antibiotic regimens in patients with cystic fibrosis (CF) and patients with non-cf bronchiectasis (BE) Dr. Juliane Bernholz, Novartis (Coordinator) Dr. Andrea Appenzeller,
Experience the Powder of Non-nebulized Pa Treatment
For people 6 years and older with cystic fibrosis (CF), Pseudomonas aeruginosa (Pa), and FEV 1 25% to 80% predicted and who do not have Burkholderia cepacia. Experience the Powder of Non-nebulized Pa Treatment
The Alan Turing Institute. Mihaela van der Schaar Ahmed Alaa
The Alan Turing Institute Mihaela van der Schaar Ahmed Alaa July 18, 2017 The Alan Turing Institute Section A: Vision Section B: CF Registry Data Analysis Section C: Research Agenda Section D: Preliminary
Bronchiectasis. What is bronchiectasis? What causes bronchiectasis?
This factsheet explains what bronchiectasis is, what causes it, and how it is diagnosed and managed. More detailed information is available on the Bronchiectasis Patient Priorities website: www.europeanlunginfo.org/bronchiectasis
HOW DISEASE ALTERING THERAPY IS CHANGING THE GOALS OF TREATMENT IN CF
HOW DISEASE ALTERING THERAPY IS CHANGING THE GOALS OF TREATMENT IN CF Peter D. Sly MBBS, MD, FRACP, DSc OUTLINE Goals of CF treatment Drivers of early disease neutrophilic inflammation oxidative stress
Clinical Commissioning Policy Proposition: Levofloxacin nebuliser solution for chronic Pseudomonas lung infection in cystic fibrosis (Adults)
Clinical Commissioning Policy Proposition: Levofloxacin nebuliser solution for chronic Pseudomonas lung infection in cystic fibrosis (Adults) Reference: NHS England 1621 First published: Month Year Prepared
Cystic Fibrosis. Cystic Fibrosis. Cystic Fibrosis 5/01/2011 CYSTIC FIBROSIS OF THE PANCREAS AND ITS RELATION TO CELIAC DISEASE. D ANDERSEN.
1938 OF THE PANCREAS AND ITS RELATION TO CELIAC DISEASE. D ANDERSEN. American Journal Diseases Children. : The beginning May 1938: 49 cases 25 20 15 Nos of cases 10 5 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5 Age
Response to the Language Equality and Acquisition for Deaf Kids (LEAD-K) Task Force Report
Response to the Language Equality and Acquisition for Deaf Kids (LEAD-K) Task Force Report Louisiana Department of Health Office of Public Health March 21, 2019 Report Title Version Number Version Date
At-A-Glance report 2014
At-A-Glance report 14 Cystic Fibrosis in Europe Facts and Figures 14 The European Cystic Fibrosis Society Patient Registry (ECFSPR) is happy to present this report with key information about how cystic
THE CANADIAN CYSTIC FIBROSIS REGISTRY
THE CANADIAN CYSTIC FIBROSIS REGISTRY 15 ANNUAL REPORTCanadian Cystic Fibrosis Registry 15 Annual Report 1 CYSTIC FIBROSIS Cystic fibrosis (CF) is a rare disease affecting almost 4, Canadians or roughly
At-A-Glance report 2013
At-A-Glance report 213 Cystic Fibrosis in Europe Facts and Figures 213 The European Cystic Fibrosis Society Patient Registry (ECFSPR) is happy to present this report with key information about how cystic
CYSTIC FIBROSIS IN AUSTRALIA 2008
CYSTIC FIBROSIS IN AUSTRALIA 2008 11th Annual Report from the Australian Cystic Fibrosis Data Registry Cystic Fibrosis Australia 2010 This work is copyright. Apart from any use as permitted under the Copyright
Cystic Fibrosis Foundation Patient Registry Annual Data Report 2006
Cystic Fibrosis Foundation Patient Registry Annual Data Report 2006 Suggested citation: Cystic Fibrosis Foundation, Patient Registry 2006 Annual Report, Bethesda, Maryland. 2008 Cystic Fibrosis Foundation
BORN Ontario: NSO DERF Training Guide FEBRUARY 2012
BORN Ontario: NSO DERF Training Guide FEBRUARY 2012 NSO DERF Encounter NSO sends newborn screening records to the BORN Information System (BIS) regularly throughout each day. When a risk letter is printed,
You Can Observe a Lot By Just Watching. Wayne J. Morgan, MD, CM
You Can Observe a Lot By Just Watching Wayne J. Morgan, MD, CM Disclosures Genentech Epidemiological Study of Cystic Fibrosis, Scientific Advisory Group CF Foundation Data Safety Monitoring Board Registry/Comparative
A longitudinal analysis of chronic MRSA and Pseudomonas aeruginosa co-infection in cystic fibrosis: A single-center study,,
Journal of Cystic Fibrosis 15 (2016) 350 356 www.elsevier.com/locate/jcf Original Article A longitudinal analysis of chronic MRSA and Pseudomonas aeruginosa co-infection in cystic fibrosis: A single-center
Key Concepts. Jie Hu, PhD., RN, FAAN
Key Concepts Jie Hu, PhD., RN, FAAN Quantitative Research: A formal, objective, systematic process in which numerical data are used to obtain information about the world. Qualitative Research: A systematic,
Relationships and Sexuality Education. Information for Parents
Relationships and Sexuality Education Information for Parents The content of RSE at post-primary level is described under three themes. These themes are neither sequential nor discrete; they merge and
PERINATAL HEPATITIS B
PERINATAL HEPATITIS B A Prevention Strategy Douglas County Health Department, Omaha, NE Why Prevention is Important About 1.25 million people in the U.S. have chronic hepatitis B infection Hepatitis B
Preface of the special issue: Recent CMV Research
Himmelfarb Health Sciences Library, The George Washington University Health Sciences Research Commons Pediatrics Faculty Publications Pediatrics 2014 Preface of the special issue: Recent CMV Research Kayla
Dutch Cystic Fibrosis Registry
Dutch Cystic Fibrosis Registry Report 2014 NCFS October, 2014 Copyright NCFS 2015 Data from this report may be used for publications and presentations provided the source of information is clearly identified
Novel Therapies for NTM
NTM Lecture Series for Providers Novel Therapies for NTM Kenneth N Olivier, MD, MPH Laboratory of Chronic Airway Infection Chief, Pulmonary Branch/DIR October 20, 2017 Disclosures Past: Cooperative Research
UK Cystic Fibrosis Registry
UK Cystic Fibrosis Registry Annual Data Report 2012: Summary September 2013 Contents Introduction 2 Summary of findings 3 About the Registry 3 Key facts about the UK cystic fibrosis population in 2012
Patient Group Input to CADTH
Patient Group Input to CADTH from: Section 1 General Information Name of the therapeutic review Name of patient group Pulmonary Arterial Hypertension Therapeutic Review Patient Group s contact information
Characterizing aggressiveness and predicting future progression of CF lung disease
Journal of Cystic Fibrosis Volume 8 Suppl 1 (2009) S15 S19 www.elsevier.com/locate/jcf Characterizing aggressiveness and predicting future progression of CF lung disease Michael W. Konstan a, *, Jeffrey
Pulmonary Exacerbations:
Pulmonary Exacerbations: Better Understanding Needed Michael Tracy, MD Clinical Assistant Professor Pediatric Pulmonary CF Pulmonary Exacerbations Definition Importance Causes Treatment Research opportunities
Pulmonary Medicine. Shaping the Future of Cystic Fibrosis Care
Pulmonary Medicine Shaping the Future of Cystic Fibrosis Care 2 Nationwide Children s Hospital Pulmonary Medicine In the Section of Pulmonary Medicine at Nationwide Children s Hospital, our innovations
From CF Adult and Family Advisors (AFA) to Community Voice
2016 Year in Review From CF Adult and Family Advisors (AFA) to Community Voice Where we have been and where we are going Community Voice is composed of over 300 people with cystic fibrosis, parents, spouses,
Icd 10 for asymptomatic bacteriuria
> > Icd 10 for asymptomatic bacteriuria at the etiology code, and a 'code first' note at the manifestation code. These instructional notes indicate the proper sequencing order of the codes, etiology followed
How Registries can be used to improve trans-national care
How Registries can be used to improve trans-national care Initial Funding FP6, 100,000 Euros per annum EuroCareCF Post FP6 Follow up support: 100,000 Euros per annum Unrestricted Grants: Pharma Blue areas:
What Women Need to Know: The HIV Treatment Guidelines for Pregnant Women
: The HIV Treatment Guidelines for Pregnant Women : The HIV Treatment Guidelines for Pregnant Women What Women Need to Know: Prepared by Elaine Gross, RN, MS, CNS-C National Pediatric & Family HIV Resource
A regulatory perspective What do I want to know?
A regulatory perspective What do I want to know? June M Raine MHRA, UK 11 December 2017 What does regulator want to know? Regulatory decision-making responsibilities Answering the regulatory questions
Dutch Cystic Fibrosis Registry
Dutch Cystic Fibrosis Registry Annual report for 2017 1 Copyright NCFS 2018 The information from this report can be used for publications and presentations, but only with a reference to the source: Dutch
Cystic Fibrosis. Advances and Asian Perspective Dr AS Paul 13 October 06
Cystic Fibrosis Advances and Asian Perspective Dr AS Paul 13 October 06 Cystic Fibrosis An Overview Asian Perspective Advances Cystic Fibrosis An Overview Epidemiology and Pathogenesis Most common severe
Cystic Fibrosis Registry of Ireland 2012 Annual Report
Cystic Fibrosis Registry of Ireland 2012 Annual Report Preface Over the past decade, the Cystic Fibrosis Registry of Ireland has taken proactive steps towards proving its value to the health service and
Cystic Fibrosis as it relates to the neonate MARIANNE MUHLEBACH, MD PROFESSOR, DEPT. PEDIATRICS UNC CHAPEL HILL
Cystic Fibrosis as it relates to the neonate MARIANNE MUHLEBACH, MD PROFESSOR, DEPT. PEDIATRICS UNC CHAPEL HILL Objectives: At the end of the presentation the listeners will Be able to describe neonatal
Clinical and Microbiological Impact of Inhaled Tobramycin Treatment on Cystic Fibrosis Patients with Pseudomonas aeruginosa
JMID/ 2017; 7 (4):178-185 Journal of Microbiology and Infectious Diseases doi: 10.5799/jmid.368802 RESEARCH ARTICLE Clinical and Microbiological Impact of Inhaled Tobramycin Treatment on Cystic Fibrosis
Program Begins Below. No other planners have indicated that they have any financial interests or relationships with a commercial entity.
HOME CME/CE INFORMATION PROGRAM DIRECTORS NEWSLETTER ARCHIVE EDIT PROFILE RECOMMEND TO A COLLEAGUE ecysticfibrosis Review VOLUME 5, ISSUE 7 Optimizing Nutrition in People with Cystic Fibrosis In this Issue...
Swiss Summary of the Risk Management Plan (RMP) for Nucala (Mepolizumab)
Swiss Summary of the Risk Management Plan (RMP) for Nucala (Mepolizumab) RMP Summary: Version 1, March 2017 EU RMP: Version 2, 26.5.2016 The Risk Management Plan (RMP) is a comprehensive document submitted
NI Health & Social Care Inequalities Monitoring System Sub-regional Inequalities - HSC Trusts 2010
NI Health & Social Care Inequalities Monitoring System Sub-regional Inequalities - HSC s 2010 NI Health & Social Care Inequalities Monitoring System Sub-regional Inequalities - HSC s 2010 Northern Ireland
Caregiver burden and quality of life of parents of young children with cystic fibrosis
Caregiver burden and quality of life of parents of young children with cystic fibrosis Professor Patricia Fitzpatrick 1 S George 1, R Somerville 1, B Linnane 2, C Fitzgerald 1 1 UCD School of Public Health,
The David Conforti Reach for the Stars Award
David Conforti was a remarkable and caring young man who made a difference in his community and inspired others through his volunteer work in York Region, Ontario. His family has described him as someone
Disease-Atlas: Navigating Disease Trajectories with Deep Learning. Bryan Lim & Mihaela van der Schaar University of Oxford
Disease-Atlas: Navigating Disease Trajectories with Deep Learning Bryan Lim & Mihaela van der Schaar University of Oxford Background: Chronic Disease Management Patients with long-term conditions have
PTSD for PAG Clinicians: Empowering Young Women with PTSD
PTSD for PAG Clinicians: Empowering Young Women with PTSD Paritosh Kaul, MD 1 Bethany D. Ashby, PsyD 2 Jennifer L. Woods, MD, MS 1 University of Colorado School of Medicine 1 Section of Adolescent Medicine,
Chapter 3 The Role of Nutrition in CF Care
Chapter 3 The Role of Nutrition in CF Care S. King, N. Saxby & N. Sander Cystic fibrosis is the most common lethal autosomal recessive genetic condition affecting Caucasians 186,187. Over 3500 Australians
Recommendations for Hospital Quality Measures in 2011:
Pediatric Measures: Recommendations for Hospital Quality Measures in 2011: Based on the input of a group of healthcare stakeholders, the following new hospital measures are recommended: 1) Home Management
UK Cystic Fibrosis Registry 2014 Annual Data Report
UK Cystic Fibrosis Registry 2014 Annual Data Report Published August 2015 The content of this report may not be used or reproduced in publications without permission of the Cystic Fibrosis Trust. Contents
Communicating About Ebola: A Guide for Leaders. Produced by the Pan American Health Organization
Communicating About Ebola: A Guide for Leaders Produced by the Pan American Health Organization Communicating About Ebola: A Guide for Leaders Pan American Health Organization/World Health Organization
SAVARA CORPORATE PRESENTATION (NASDAQ: SVRA) NOVEMBER 2018
SAVARA CORPORATE PRESENTATION (NASDAQ: SVRA) NOVEMBER 2018 SAFE HARBOR STATEMENT Savara Inc. ( Savara or the Company ) cautions you that statements in this presentation that are not a description of historical
ANNUAL REPORT 2015 AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY. This publication was produced with the support of Cystic Fibrosis Australia.
AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY ANNUAL REPORT 2015 This publication was produced with the support of Cystic Fibrosis Australia. AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY ANNUAL REPORT 2015 1 CONTENTS
THE BELGIAN CYSTIC FIBROSIS REGISTRY
THE BELGIAN CYSTIC FIBROSIS REGISTRY SUMMARY REPORT 2010 BMR BELGISCH MUCOVISCIDOSE REGISTER RBM REGISTRE BELGE DE LA MUCOVISCIDOSE Scientifi c Institute of Public Health, Brussels 2012. This report may
BMR Be l g i s c h Mu c o v i s c i d o s e Re g i s t e r
The Belgian CYSTIC FIBROSIS Registry Annual Report 2007 BMR Be l g i s c h Mu c o v i s c i d o s e Re g i s t e r RBM Registre Belge de la Mucoviscidose Scientific Institute of Public Health, Brussels
Factors associated with changes in health-related quality of life in children with cystic fibrosis during 1-year follow-up
Eur J Pediatr (2017) 176:1047 1054 DOI 10.1007/s00431-017-2928-6 ORIGINAL ARTICLE Factors associated with changes in health-related quality of life in children with cystic fibrosis during 1-year follow-up
4.0 Product Testing. 4.1 Routine Testing
4.0 Product Testing The MCIR program has established methods for testing new features prior to dissemination. Section 4.1 describes the routine testing processes. The defects identified through this process
Focus on Cystic Fibrosis. Cystic Fibrosis. Cystic Fibrosis
Focus on (Relates to Chapter 29, Nursing Management: Obstructive Pulmonary Diseases, in the textbook) Copyright 2011, 2007 by Mosby, Inc., an affiliate of Elsevier Inc. Autosomal recessive, multisystem
About Your Ventricular Assist Device (VAD) Surgery
About Your Ventricular Assist Device (VAD) Surgery Why do I need surgery for a Heart Pump or Ventricular Assist Device (VAD)? VAD s may help you live longer. These electric powered heart pumps are put
Patient and public involvement. Guidance for researchers
Patient and public involvement Guidance for researchers Contents What is patient and public involvement and why is it important? 3 Benefits of patient and public involvement for researchers 4 Levels of
Patient Registry. Annual Data Report
Patient Registry 2011 Annual Data Report THE CF FOUNDATION WISHES TO THANK the people with CF and their families who contributed their photos to this report. PHOTOGRAPHY BY Cade Martin Photography Dakota
ESPEN Congress Nice From child to adult nutrition. Cystic fibrosis. A. Munck
ESPEN Congress Nice 2010 From child to adult nutrition Cystic fibrosis A. Munck Cystic fibrosis nutrition: from child to adulthood -Positive impact of optimizing nutrition -Monitoring nutritional status
Making Connections: Early Detection Hearing and Intervention through the Medical Home Model Podcast Series
Making Connections: Early Detection Hearing and Intervention through the Medical Home Model Podcast Series Podcast 1: Shared Decision Making and Parents as Partners for Children who are Deaf or Hard of
CF, Mental Health, TAYLOR GONZALEZ. & Exercise
CF, Mental Health, TAYLOR GONZALEZ & Exercise This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS), under grant
Pseudomonas aeruginosa eradication guideline
SCOTTISH PAEDIATRIC CYSTIC FIBROSIS MCN Pseudomonas aeruginosa eradication guideline Date Created: 27 th June 2013 Date Approved by Steering Group: 30 th May 2014 Date of Review: 31 st May 2016 Lead Author:
Q1 Do you identify as?
Q1 Do you identify as? Answered: 101 Skipped: 0 Male Female Prefer not to say Other (please specify) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Male Female Prefer not to say Other (please specify) 48.51%
Changes in the management of children with Cystic Fibrosis. Caroline Murphy & Deirdre O Donovan CF Nurses
Changes in the management of children with Cystic Fibrosis Caroline Murphy & Deirdre O Donovan CF Nurses What Is Cystic Fibrosis? Cystic fibrosis (CF) is an inherited chronic disease that primarily affects
CRN Wessex Patient Research Experience Survey 2017/18 Report
Clinical Research Network Wessex CRN Wessex Patient Research Experience Survey 2017/18 Report Authors names & job titles Main issues/executive Summary Kim Appleby, communications lead, CRN Wessex and Graham
Childhood Undernutrition: a biological perspective
Childhood Undernutrition: a biological perspective Vinod Paul MD, PhD, FIAP, FNNF, FAMS ALL INDIA INSTITUTE OF MEDICAL SCIENCES, NEW DELHI WHO Collaborating Centre for Training an Research in Newborn Care
The ecology of disease interactions in CF
1/44 The ecology of disease in CF University of Utah Department of Mathematics and Department of Biology September 4, 2014 2/44 The big questions in ecology Why are there so many species? Charley Harper
Lung Transplant for Cystic Fibrosis
Curr Respir Care Rep (2013) 2:180 186 DOI 10.1007/s13665-013-0054-0 LUNG TRANSPLANT (MR ZAMORA, SECTION EDITOR) Lung Transplant for Cystic Fibrosis David Weill & Kapil Patel Published online: 12 June 2013
The Process of Measurement: An Overview
The Process of Measurement: An Overview The process of measurement consists of obtaining a quantitative comparison between a predefined standard and a measurand. Measurand = Physical parameter being measured:
Pediatrics Skills Checklist
Pediatrics Skills Checklist This assessment is for determining your experience in the below outlined clinical areas. This checklist will not be used as a determining factor in accepting your application
Comparison of growth status of patients with cystic fibrosis between the United States and Canada 1 3
Comparison of growth status of patients with cystic fibrosis between the United States and Canada 1 3 Hui-Chuan Lai, Mary Corey, Stacey FitzSimmons, Michael R Kosorok, and Philip M Farrell ABSTRACT Background:
Summary of the risk management plan (RMP) for Duloxetine Lilly (duloxetine)
EMA/674705/2014 Summary of the risk management plan (RMP) for Duloxetine Lilly (duloxetine) This is a summary of the risk management plan (RMP) for Duloxetine Lilly which details the measures to be taken
Respiratory infection rates differ between geographically distant paediatric cystic fibrosis cohorts
ORIGINAL ARTICLE CYSTIC FIBROSIS Respiratory infection rates differ between geographically distant paediatric cystic fibrosis cohorts Kathryn A. Ramsey 1,2,7, Emily Hart 3,4,7, Lidija Turkovic 1, Marc
Priorities for achieving Millennium Development Goals (MDGs) 4 and 5 in the European Region
Priorities for achieving Millennium Development Goals (MDGs) 4 and 5 in the European Region Zsuzsanna Jakab WHO Regional Director for Europe A big challenge Globally every year 7.6 million children die
Bilateral Wilms Tumor: New Protocols and Procedures by Dawn Wolf
www.complexchild.com Bilateral Wilms Tumor: New Protocols and Procedures by Dawn Wolf Masses...tumors...oncologist...straight to the ER... Those were the words the doctor was using as he talked about our
PORT CFNZ National Data Registry ~ 1 ~
PORT CFNZ 2014 National Data Registry ~ 1 ~ ~ 2 ~ The Port CFNZ National Data Registry is a research project of Cystic Fibrosis New Zealand. For further information about the CFNZ visit www.cfnz.org.nz
AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY ANNUAL REPORT This publication was produced with the support of Cystic Fibrosis Australia.
AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY ANNUAL REPORT 2017 This publication was produced with the support of Cystic Fibrosis Australia. CONTENTS FOREWORD 1 INTRODUCTION 2 DATA PERIOD 2 ABBREVIATIONS 2
Most candidates were able to gain marks on this question, though there were relatively few who were able to explain interpretive sociology.
SOCIOLOGY Paper 0495/01 Paper 1 General comments There was a wide range of responses from candidates ranging from outstanding to those who seemed illprepared for the examination. The paper appeared to