CSER Research Materials

Here is a list of research materials that have come out of CSER research.

Contents

• Consent Forms
• Participant Education Materials
• Protocol and Research Resources
• Results Report Templates
• Description of Variant Analysis Pipeline
• Framework for Primary and Secondary Findings

Participant Consent Forms

Baylor College of Medicine

• Patient Consent Form
• Patient Consent Form (Spanish Version)
• Physician Consent Form
• Parent Consent Form
• Parent Consent Form (Spanish Version)
• Age of Majority Consent Form

Brigham & Women's Hospital

• Cardiologist Consent Form
• Primary Care Physician Consent Form
• Patient Consent Form (Cardiology)
• Patient Consent Form (Primary Care Physician)

Children's Hospital of Philadelphia

• Consent Form

ClinSeq

• Consent Form

Dana-Farber Cancer Institute

• Patient Consent Form
• Physician Consent Form

Kaiser Permanente

• Male Consent Form
• Female Consent Form

HudsonAlpha

• Consent Form

University of Michigan

• MIONCOSEQ Consent Form (June 2016)
• PEDSMIONCOSEQ Informed Consent Form

University of North Carolina

• Parental Consent for Child Relatives of an study participant to test for a specific variant
• Assent Form: (Ages 7-14) Relatives of an study participant to test for a specific variant
• Assent Form: (Ages 15-17) Relatives of an study participant to test for a specific variant
• Consent for Adult Relatives of an study participant to test for a specific variant

Univerisity of Washington

• Consent Form
• Endometrial Consent Form
• Consent for return of results in event of participant death

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Participant Education Materials

Baylor College of Medicine

• Study Brochure
• Study Borchure (Spanish Version)
• Genetic Information Nondiscrimination Act (GINA) Document
• GINA Document (Spanish Version)
• Tumor Mutation Explanation Card
• Tumor Mutation Explanation Card (Spanish Version)
• Inherited Mutation Explanation Card
• INherited Mutation Explanation Card (Spanish Version)
• X-Linked Explanation Card
• X-Linked Explanation Card (Spanish Version)
• Revised Carrier Status Explanation Card
• Revised Carrier Status Explanation (Spanish Version)

ClinSeq

• Study Brochure

Dana-Farber Cancer Institute

• Patient Information Brochure

University of Michigan

• Patient FAQ
• Patient Vignettes

University of North Carolina

• Study Brochure
• Incidental Information Brochure
• "What can I learn from WES" Brochure

University of Washington

• Incidental Findings Choice Document

Protocol and Research Resources

Baylor College of Medicine

• Germline Requisition Document
• Study Questionnaires for Primary or Secondary parent completing for themselves
• Study Questionnaires for Primary or Secondary parent completing for themselves (Spanish Version)
• Family history questionnaire for primary parent
• Family history questionnaire for primary parent (Spanish Version)
• Study questionnaire for primary parent completing for child
• Study questionnaire for primary completing comleting for child (Spanish Version)

Brigham & Women's Hospital

• MedSeq Protocol Trials

Dana-Farber Cancer Institute

• Physician Protocol
• Patient Protocol

University of Michigan

• MIONCOSEQ Protocol
• PEDSMIONCOSEQ Protocol

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Results Report Template

Baylor College of Medicine

• Germline Report Template
• Tumor Report Template

Brigham & Women's Hospital

• Sample Genome Report

Children's Hospital of Philadelphia

• Sample Results Report Format (Positive Result)
• Sample Results Report Format (Negative Result)

ClinSeq

• Primary Results / ACMG Secondary Variant Findings Report Template
• Carrier Results Report Template

Dana-Farber Cancer Institute

• Sample Positive Report
• Sample Negative Report

HudsonAlpha

• Summary Results Report Template
• Detailed Results Report Template

Kaiser Permanente

• Negative Carrier Status Report Template
• Positive Carrier Status Report Template
• Negative Whole Genome Sequencing Incidental Findings Template

University of Michigan

• MIONCOSEQ Patient Report Template

University of North Carolina

• Sample WES Report
• Sample CLIA report

University of Washington

• Report Template for Negative Incidental Finding result
• Report Template for Positive Incidental Finding result
• Report Template for Negative Diagnosis Result
• Report Template for Positive Diagnosis Result

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Description of Variant Analysis Pipeline

Baylor College of Medicine

• Yang JAMA Journal Article

Brigham & Women's Hospital

• McLaughlin et al Journal Article
• Kong et al Journal Article

University of North Carolina

• NCGenes Medical Workflow Engine Description
• NCGenes Variant Database Description
• NCGenes MapSeq Sequence Analysis Workflow Description

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Framework for Primary and Secondary Results

Baylor College of Medicine

• Incidental Findings

HudsonAlpha

• ACMG and OMIM Gene List used for Secondary Findings

Kaiser Permanente

• List of Genes/Conditions reported for Carrier Status
• List of Genes/Conditions reported for Incidental Findings

University of Washington

• List of Genes/Conditions reported for Incidental Findings
• List of Genes/Conditions reported for Carrier Status