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

Poster #MP-M-04

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) 20161

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.

 

Poster #FVIII13

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

The Patient Reported Outcomes, Burdens and Experiences (PROBE) Phase 1 Study. Oral Presentation (Oral 167) at Health Technology Assessment international (HTAi) 2016 Annual Meeting. https://issuu.com/htai/docs/tokyo-htai_abstracts_20160512-may13/1. Last accessed: 13 May 2016. Abstract Book:
 
 

Poster #39

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

 

2

 

 

 

 

 

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

CHS E-liaison Newsletter

An update of activities from the national office of the Canadian Hemophilia Society

 

HTAi Conference - Tokyo, May 2016

Multi-stakeholder Approaches to Improve Evidence-Based Decisions in Rare Diseases: Engagement of Patients and Patient Organizations

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.