Table 1, Key Stakeholders Participating in All Aspects of Study Design, Analysis, and Reporting by Role and Contribution to Overall Project - Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

Stakeholder	Role	Contribution
Marc S. Williams	Principal investigator	Pediatric genetics, genomic and informatics expertise, study design
Michele Bonhag	Patient investigator	Patient perspective, study design, outcomes, analysis
Michael Segal	Co-investigator	Pediatric neurogenetics and informatics expertise, patient experience medical liaison
Heather Stuckey	Co-investigator	Study design, qualitative research, analysis
Doris Zallen	Co-investigator	Consumer genomics research, qualitative research, outcome measures
Alanna Kulchak Rahm	Co-investigator	Genetic counseling, study design, qualitative research, survey development, outcome measures
Jamie Green	Co-investigator	Nongenetics provider, health literacy, patient engagement
Lynn Feldman	Co-investigator	Patient perspective, patient content and experience, usability
Janet Williams	Co-investigator	Genetic counseling, genomics expertise, qualitative research, patient education
Audrey Fan	Co-investigator	Genetic counseling, genomics expertise, qualitative research, patient education
Kara Fultz	Study coordinator	Public health, study design, patient contact, survey design

Stakeholder

Role

Contribution

Marc S. Williams

Principal investigator

Pediatric genetics, genomic and informatics expertise, study design

Michele Bonhag

Patient investigator

Patient perspective, study design, outcomes, analysis

Michael Segal

Co-investigator

Pediatric neurogenetics and informatics expertise, patient experience medical liaison

Heather Stuckey

Co-investigator

Study design, qualitative research, analysis

Doris Zallen

Co-investigator

Consumer genomics research, qualitative research, outcome measures

Alanna Kulchak Rahm

Co-investigator

Genetic counseling, study design, qualitative research, survey development, outcome measures

Jamie Green

Co-investigator

Nongenetics provider, health literacy, patient engagement

Lynn Feldman

Co-investigator

Patient perspective, patient content and experience, usability

Janet Williams

Co-investigator

Genetic counseling, genomics expertise, qualitative research, patient education

Audrey Fan

Co-investigator

Genetic counseling, genomics expertise, qualitative research, patient education

Kara Fultz

Study coordinator

Public health, study design, patient contact, survey design

From: Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

Cover of Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders [Internet].

Williams M, Williams J, Rahm A, et al.

Washington (DC): Patient-Centered Outcomes Research Institute (PCORI); 2018 Sep.

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Table 1Key Stakeholders Participating in All Aspects of Study Design, Analysis, and Reporting by Role and Contribution to Overall Project