Publications - 2016
Abstracts
American Society of Hematology (ASH) 2016
Abstract #92653
TEST - RETEST RELIABILITY ANALYSIS OF THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE)
Citation:
Chai-Adisaksopha, C., Iorio, A., Curtis, R., Frick, N., Nichol, M., Noone, D., O'Mahony, B., Page, D., Stonebraker, J., & Skinner, M. (2016). Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE). Blood, 128(22), 5964.
For Abstract Click HERE
World Federation of Hemophilia (WFH) 2016
WFH 2016 Abstract
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY RESULTS
Citation:
M. W. Skinner, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). The Patient Reported Outcomes Burdens and Experiences (PROBE) Study Phase 1 Methodology and Feasibility Results. Moderated Poster Presentation (180 MP). World Federation of Hemophilia World Congress 2016. Haemophilia, 22: 3–138 (2016). doi: 10.1111/hae.12980
For Abstract Click HERE (Page 116)
European Conference of Rare Diseases & Orphan Products (ECRD, EURODIS) 2016
Abstract #68462
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY
Citation:
M. W. Skinner, M. Driessens, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). The Patient Reported Outcomes, Burdens and Experiences (PROBE) Study Phase 1 Methodology and Feasibility. Poster Presentation (141) ECRD 2016: The European Conference on Rare Disease & Orphan Products.
International Society on Thrombosis & Haemophilia (ISTH, SSC) 2016
Abstract #A-776-0036-00229
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY
Citation:
M. W. Skinner, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). Poster Presentation (FVIII13) at the International Society of Thrombosis and Haemostasis (ISTH) SSC 2016. The Patient Reported Outcome Burdens and Experiences (PROBE) study – Phase 1 Results Show PROBE Study Methodology Feasible. Journal of Thrombosis and Haemostasis, 14: 1–168 (2016). doi: 10.1111/jth.13325
For Abstract Click HERE
Health Technology Assessment international (HTAi) 2016
Abstract #20160512
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY
The Patient Reported Outcomes, Burdens and Experiences (PROBE) Phase 1 Study. Oral Presentation (Oral 167) at Health Technology Assessment international (HTAi) 2016 Annual Meeting.
For Abstract Click HERE
European Association for Haemophilia and Allied Disorders (EAHAD) 2016
Abstract #EAHAD2016-ABS-1084
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY
Citation:
M. W. Skinner, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). The Patient Reported Outcomes, Burdens, and Experiences (Probe) Phase 1 Study Methodology and Feasibility, Poster Presentation (P039). Haemophilia, 22: 19–111 (2016). doi: 10.1111/hae.1_12882
For Abstract Click HERE
Posters and Oral Presentations
World Federation Of Hemophilia (WFH) 2016
Moderated Poster Presentation #MP-M-04
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY RESULTS
Citation:
M. W. Skinner, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). The Patient Reported Outcomes Burdens and Experiences (PROBE) Study Phase 1 Methodology and Feasibility Results. Moderated Poster Presentation (MP-M-04) World Federation of Hemophilia World Congress 2016. Abstract Haemophilia, 22: 3–138 (2016). doi: 10.1111/hae.12980. doi: 10.3252/pso.eu.WFH2016.2016
European Conference on Rare Diseases & Orphan Products (ECRD, EURODIS) 2016
Poster #141
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY
Citation:
M. W. Skinner, M. Driessens, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). The Patient Reported Outcomes, Burdens and Experiences (PROBE) Study Phase 1 Methodology and Feasibility. Poster Presentation (141) ECRD 2016: The European Conference on Rare Disease & Orphan Products.
International Society on Thrombosis & Haemophilia (ISTH, SSC) 2016
Poster #FVIII13
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY - PHASE 1 RESULTS SHOW PROBE STUDY METHODOLOGY AND FEASIBILITY
Citation:
M. W. Skinner, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). Poster Presentation (FVIII13) at the International Society of Thrombosis and Haemostasis (ISTH) SSC 2016. The Patient Reported Outcome Burdens and Experiences (PROBE) study – Phase 1 Results Show PROBE Study Methodology Feasible. Abstract: Journal of Thrombosis and Haemostasis, 14: 1–168 (2016). doi: 10.1111/jth.13325
Health Technology Assessment international (HTAi) 2016
Oral Presentation #167
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) PHASE 1 METHODOLOGY AND FEASIBILITY STUDY TO ENHANCE THE DIRECT PATIENT VOICE IN HEALTHCARE DECISION MAKING
European Association for Haemophilia and Allied Disorders (EAHAD) 2016
Poster #039
THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY PHASE 1 METHODOLOGY AND FEASIBILITY
Citation:
M. W. Skinner, R. Curtis, N. Frick, A. Iorio, M. Nichol, D. Noone, B. O’Mahony, D. Page, J. Stonebraker on behalf of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Investigator Group (2016). The Patient Reported Outcomes, Burdens, and Experiences (Probe) Phase 1 Study Methodology and Feasibility, Poster Presentation (P039). Abstract: Haemophilia, 22: 19–111 (2016). doi: 10.1111/hae.1_12882
Other Publications
HemAware Magazine - Summer 2016
PROBE-ıng Patients with Hemophilia - English
PROBE-ıng Patients with Hemophilia - Spanish
Global survey aims to improve quality of life
The article tells about PROBE study and it's purpose and development. It shares with the reader about early stages of the study and observations as well as the future plans and steps.
The News Infusion (Volume 6, Issue 4) - Summer 2016
Newsletter of Hemophilia of South Carolina
The News Infusion's mission is to provide communication, connections, education and advocacy awareness. It is published quarterly by Hemophilia of South Carolina as an informational service to its members, friends, and affiliates of South Carolina’s bleeding disorders community. The News Infusion does not endorse any provider, company or product, and further recommends that its readers always consult with their physicians and health care providers. The News Infusion is for educational and communication purposes only and makes no claim to its accuracy. The News Infusion is endorsed by the South Carolina Hemophilia Treatment Center and the National Hemophilia Foundation.
Haemophilia Foundation Australia - March - September 2016
National Haemophilia Article on Phase 1 - March 2016
The PROBE section on their official website HERE
Canadian Hemophilia Society Newsletter - June 2016
An update of activities from the national office of the Canadian Hemophilia Society
HTAi Conference - Tokyo, May 2016
This report has been approved by all presenters to be presented as a public record of the HTAi panel and should be cited as:
Granados A, Mullin T, Moseley J, Meyer F, Avetisyan R, Wong-Rieger D, Kaatee M, Skinner M, Leyden S. Multi-stakeholder Approaches to Improve Evidence-Based Decisions in Rare Diseases: Engagement of Patients and Patient Organizations. Report of HTAi 2016 Panel Session. Health Technology Assessment International – Canada. 2016.