Project Team 1: Use of patient registry data in the development of ‘real world’ economic information on health care costs (Real World HC Costs).
Chair: Lynn Okamoto PhD
Members: Jacqui Miot PhD; Sue Gao PhD, MPH; Scott McKenzie MD; Krista Payne MEd;
Susan Shiff PhD; Alicia Shillington PhD, MPH

1. Sources of economic and financial data to be included in patient registries.
2. Health care resource utilization.
3. Recommendations for how health care decision makers can use economic data from registries.

Project Team 2:  Use of patient registry data in evaluating patient-reported outcomes (PRO EVAL).
Chair: Carl Asche PhD
Members: Tao Fan PhD, MS; Mark Jewell PhD; Michael Pollock; Matthew Reaney MSc;
Wendy Toler PharmD; Kathi Weis PhD, DrPH

1. Identify ways to incorporate PROs into registries to build evidence for health care decision-making.
2. Recommendations for how health care decision makers can use PRO data collected in registries.

Project Team 3: Use of patient registry data as a complement to randomized clinical trial data (PR & RCT DATA).
Chair: Steve Takemoto PhD
Members: Nancy Dreyer PhD, MPH; Claudio Faria PharmD, MPH; Trisha Hutzul MSPH;
Gerlinde Kaempf MA; Pat McCollam RPh, BS, PharmD; Fang Wang PhD, MD;
Jaroslaw Wechowski PhD, MD; Jasmanda Wu PhD, MPH

1. Hierarchy of evidence.
2. Internal validity versus external validity.
3. Randomized clinical trial strengths and weaknesses.
4. Patient registry strengths and weaknesses.
5. Good research practices for the use of patient registry data as a complement to randomized clinical trial evidence.

Project 4: An annotated patient registry bibliography (in development)

1. Background articles on patient registries
2. Peer-reviewed journal articles on registries and use of registry data

Project  5:  Development of a Patient Registry Directory (in development)

1. Review clinical trial directories
2. Research & compile entries for directory