Patient Reported Outcome (PRO) and Observer Reported Outcome (OBSRO) Assessment in Rare Disease Clinical Trials - Emerging Good Practices

Patient Reported Outcome and Observer Reported Outcome Assessment in Rare Disease Clinical Trials – Emerging Good Practices: An ISPOR COA Emerging Good Practices Report

The citation for this report is:
Benjamin K, Vernon MK, Patrick DL et al. Patient Reported Outcome and Observer Reported Outcome Assessment in Rare Disease Clinical Trials - Emerging Good Practices: An ISPOR COA Emerging Good Practices Report. Value Health 2017; (7):838-855.

Editorial: Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Trials
Sarah Acaster, MSc, Director, Acaster Lloyd Consulting, London, England, UK

Co-Chairs:
Katy Benjamin, PhD, SM
Director, Patient-Reported Outcomes
ICON Commercialisation and Outcomes
Gaithersburg, MD, USA
Margaret K. Vernon, PhD
Vice President, Outcomes Research
Evidera
Bethesda, MD, USA
Leadership Group:

Laurie Burke, RPh, MPH, Founder, LORA Group and Affiliate Associate Professor, Pharmaceutical Health Services Research, University of Maryland, School of Pharmacy, Baltimore, MD, USA
Sandra Nestler-Parr, PhD, MSc, MPhil, Director, RareAccess Ltd., London, England, UK
Donald L. Patrick, PhD, MSPH, Director, Seattle Quality of Life Group and Biobehavioral Cancer Training Program, University of Washington, Seattle, WA, USA
Eleanor Perfetto, PhD, MS, Professor, Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, Baltimore, MD, USA

Activities:

ISPOR Clinical Outcome Assessment (COA) Measurement in Rare Disease Clinical Trials Emerging Good Practices Task Force–A Case Study on Application of Final Recommendations
May 2017 – 22nd Annual International Meeting, Workshop Presentation, Boston, MA, USA

Clinical Outcomes Assessment (COA) Measurement in Rare Disease Clinical Trials – A Case Study on Application of Emerging Good Practices
May 2016 – 21st Annual International Meeting, Forum Presentation, Washington, DC

Clinical Outcomes Assessment Measurement in Rare Disease Clinical Trials – Emerging Good Practices
9 November 2015 – 18th Annual European Congress, Forum Presentation, Milan, Italy

Clinical Outcomes Assessment Measurement in Rare Disease Clinical Trials – Emerging Good Practices
May 2015 – 20th Annual International Meeting, Workshop Presentation, Philadelphia, PA, USA

PRO and ObsRO Measurement in Rare Disease Clinical Trials – Emerging Good Practices
June 2014 – 19th Annual International Meeting, Forum Presentation, Montreal, AB, Canada


If you are interested in joining this ISPOR Task Force, please complete the Special Interest Group and Task Forces Form.


Task Forces Index