The Clinical Sequencing Exploratory Research (CSER Phase 1) consortium and Clinical Sequencing Evidence-Generating Research (CSER Phase 2) consortium has produced a vast amount of publications and materials from their studies. Below are the research materials that CSER have shared with the research community.

CSER Phase 2 Harmonized Measures

Adult Measures

Parental Measures

Organizational Readiness to Change

Provider Measures

Spanish Adult Measures

Spanish parental Measures

CSER Phase 2 Validation Templates

Below you will find templates generated by the CSER validation team. These templates go into detail about the origins of the harmonized measures chosen for our work, and changes made to them to address individual study needs. Information in these templates include: original citation, related citations, description of operational construct, scoring instructions and cut points, and evidence of reliability and validity, as well as other information.

Baseline Measures


Measure name

Link
Access to care https://docs.google.com/document/d/1yApCCI7ZM5apvJ21VB_EBWulSKebhL3LjqVL...
Country of origin https://docs.google.com/document/d/1Vmo5wWxyFZ1TUC4T4b3og21_pdOLYfOnoeE-...
Health literacy https://docs.google.com/document/d/1vJO81Cx90GadRpwrK58TV-Lhnzqdbk1hRXdt...
Income adult https://docs.google.com/document/d/1vIjzCCSsQDX97zd_MoyQx8EeB6LkszT8t5RF...
Income parent https://docs.google.com/document/d/1X1MgF2k3ZVGlYf8FdIglzxutDrvilffpEKpD...
Insurance adult https://docs.google.com/document/d/1ql1onJqtx-DfZuZZWJwuVEvc_fmbv825A7Se...
Insurance parent https://docs.google.com/document/d/18--XJaJs4Lq9j6w7IfcGbFw9iAYE-sIO0oiO...
Language https://docs.google.com/document/d/1p8mo3b7sUWy5R6af7mnhjNmOWwZP739wh4JL...
Subjective Numeracy https://docs.google.com/document/d/1M2Ap_8eb-XmNbmL0ZX3L-Khm9R7DSqE7hWQ_...
QOL SF-12 https://docs.google.com/document/d/1Sc631D2_Mf302wzfNTQmVaQRCd5kjWEmhZ14...
VAS https://docs.google.com/document/d/1UqVKF0WuXQBhKHWboZ_oz_LIqmVtNs9-AfO6...
PEDS QL https://docs.google.com/document/d/1nh95KkNXSYLe7xikyq7f-Oj8Ubf049Xivvcz...
Gender/Sex (Adult & Parent) https://docs.google.com/document/d/1-b_etHibm22Z4uCE9WRHJs9Wz6UmHX_AZz60...
Race & Ethnicity https://docs.google.com/document/d/1rzQlvPV7IcEU2KXsazKd_ZTw-B1uacrRx_1F...

Follow-up Measures (RoR FU1/2)


Measure name

Link
Feelings about Return of Genomic Results (FACToR) https://docs.google.com/document/d/181acmRjKFrH1QOLZqc_dJLuAHS5_n-tsk4kd...
Information seeking (Adult & Parent) https://docs.google.com/document/d/1gSWtA_TB7oTAWby59ClPPRPRmgdV4xBRyFQL...
Recommended Medical Actions and Follow Through on Recommendations Attributable to Genomic Testing (MRA) https://docs.google.com/document/d/1PLudTOKUTI94ZKNm2TKju-4JdWC660G5Gf3d...
Patient-Initiated Actions Attributable to Genomic Testing (PIA) https://docs.google.com/document/d/1PZZiTgtLHMGiAVZoCiyZpQ4yfdvAOhlY6Um-...
Patient reported utility (PRU) https://docs.google.com/document/d/1RdvcNrKoJ1y9lO9hvgjiXyVwmYEcAOYeEAnR...
QOL SF-12 https://docs.google.com/document/d/1Sc631D2_Mf302wzfNTQmVaQRCd5kjWEmhZ14...
Understanding (Adult & Parent) https://docs.google.com/document/d/1yayplYWOMuO3oNy78pNF-90qiqZPHxmY8F2L...

CSER Phase 1 Participant Consent Forms

Baylor College of Medicine

Brigham & Women's Hospital

Children's Hospital of Philadelphia

ClinSeq

Dana-Farber Cancer Institute

Kaiser Permanente

HudsonAlpha

University of Michigan

University of North Carolina

University of Washington

CSER Phase 1 Participant Education Materials

Baylor College of Medicine

ClinSeq

Dana-Farber Cancer Institute

University of Michigan

University of North Carolina

University of Washington

CSER Phase 1 Protocol and Research Resources

Baylor College of Medicine

Brigham & Women's Hospital

Dana-Farber Cancer Institute

University of Michigan

CSER Phase 1 Results Report Template

Baylor College of Medicine

Brigham & Women's Hospital

Children's Hospital of Philadelphia

ClinSeq

Dana-Farber Cancer Institute

HudsonAlpha

Kaiser Permanente

University of Michigan

University of North Carolina

University of Washington

CSER Phase 1 Description of Variant Analysis Pipeline

Baylor College of Medicine

Brigham & Women's Hospital

University of North Carolina

CSER Phase 1 Framework for Primary and Secondary Results

Baylor College of Medicine

HudsonAlpha

Kaiser Permanente

University of Washington