Risk Assessment & Screening Toolkit

to Detect Familial, Hereditary, and Early Onset Colorectal Cancer

The Jackson Laboratory, American Cancer Society and National Colorectal Cancer Roundtable have developed a toolkit for primary care providers to help them implement a structured family history collection system to identify and manage individuals at increased or high risk of colorectal cancer (CRC), and to facilitate timely diagnostic evaluation of patients with signs or symptoms of early onset CRC.

Learning objectives

  1. Create a system to integrate family history collection and screening into practice flow
  2. Identify patients at increased or high risk of CRC based on personal and/or family history
  3. Apply screening guidelines to patients at increased and high risk
  4. Refer high risk patients to genetic services for further evaluation, counseling, and testing
  5. Include CRC in the differential diagnosis of adults under age 50 with alarm signs and symptoms
Toolkit Overview

Who should use the toolkit

The toolkit is intended for primary care clinicians and administrators, including physicians, nurse practitioners, and physician assistants who specialize in internal medicine, family practice, and obstetrics/gynecology, and office managers or administrators working in these settings. Components of the toolkit may also be used by other primary care staff, such as nurses and medical assistants, who may be involved in family history collection and other associated activities.

This toolkit is designed to be used by a clinical champion or administrator to identify and implement a CRC risk assessment solution that works for the practice. The toolkit also contains guidance and education for clinicians and staff who are interested to learn more about family history collection, CRC risk assessment and risk management, and the detection of early onset CRC.

Personalize the toolkit for your needs

The toolkit is designed so that you can customize your experience. Each page provides the information you need to complete a task so you can create a customized toolkit by assembling only the pages that are relevant to your practice needs.

The toolkit can be used by practices that are considering a systematic family history collection process for the first time, as well as those that may have already begun implementation who are looking for guidance on a specific issue. New and experienced users may use the toolkit in different ways. For example, practices that are new to systematic family history collection may want to read the entire toolkit prior to implementing processes, while those who have already embarked on implementation may wish to use only the tools and pages to build clinical skills around family history collection and identification of early onset colorectal cancer.

Navigating the toolkit

There are different ways to access the toolkit. You can download the full comprehensive version. For quick reference or to receive an overview of the toolkit, you can reference the Quick Start guide.

To customize the toolkit for your practice needs or to view select sections of interest, use the interactive table of contents below to access and download pages.

  download full toolkit   quick start version


The Risk Assessment & Screening Toolkit


Chapter 1 Introduction

The Value of Family History in Cancer Risk Assessment
The Importance of Identifying Colorectal Cancer Family History
Early Onset Colorectal Cancer
Update on Colorectal Cancer Screening
How to Use This Toolkit. Review background about the toolkit development, including its purpose, learning objectives, and intended use.

Chapter 2 Clinical Systems

Establish a System for Structured Assessment. Review components of a cancer risk assessment system which includes a standardized process for family history collection and interpretation as well as guidance for developing a personalized management plan for patients.
Assembling a Team. Identify core members of the implementation team and engage them in planning sessions.
Assessing Your Existing Workflow. Review and describe your existing workflow to identify potential improvements.
Setting Goals. Establish your goals and desired outcomes for risk assessment to help you identify the best process and tools for your practice.

Planning a Workflow for Family History Collection, Documentation, and Interpretation

When to Collect. Figure out when family history should initially be collected and assessed, and how often it should be updated.
Where to Document. Choose a documentation method that allows for easy retrieval, assessment and updating, as family history changes over time.
Method in Action: Using an Electronic Patient Questionnaire to Collect Cancer Family History. Learn how one practice determined how to implement an electronic family history collection and risk assessment tool in practice.
Who Will Collect. Work with your team to determine who will collect the family history: the patient him- or herself, allied health professional, the primary provider, or some combination of the three.
Method in Action: Utilizing nurse wellness visits for cancer family history risk assessment. Learn how one practice implemented a nurse-lead cancer risk assessment appointment using a paper-based risk assessment tool.
Who Will Interpret. Determine if family history interpretation and risk assessment will solely reside with the primary care provider, or if it will also be aided by other team members and specialists.
Identifying Opportunities for Improvement and Defining New Workflow. Identify opportunities to improve your current workflow through incorporation of best practices and integration of a family history tool.
Selecting and Evaluating Tools for Collection and Risk Assessment. Select a family history tool that best fits the needs of your practice.

Planning Management Protocols for Increased and High Risk Patients

Identifying Genetic & Cancer Specialists for Consultation. Collaborate with specialists to deliver cancer services to your patients.
Identifying Screening Protocols for Increased Risk Patients. Pick the set of guidelines your practice will use to determine screening recommendations for patients with a positive family history of cancer or polyps.
Method in Action: Identify Screening Protocols for Increased Risk Patients. Learn how one practice evaluated and selected professional society guidelines to apply to its clinic population. 
Identifying Patient Materials. Engage the patient with patient-friendly education and information.
Identifying Evidence-based Interventions to Facilitate Screening Adherence in Increased Risk Patients. Increase CRC screening through interventions tailored to the patient’s health beliefs and barriers.
Considerations for Providing Direct Genetic Counseling and Testing. Review the clinician training, laboratory selection, genetic counseling, and high risk management considerations for genetic testing in the primary care clinic.

Training, Launch, and Evaluation Considerations

Training. Prepare the whole team for success by providing adequate training.
Planning for Launch. Prepare staff and patients for launch.
Monitoring and Evaluation. Evaluate and iterate to promote improvement.

Chapter 3 Clinical Skills and Tools for Patient Care

Assess Patient for Increased or High Risk of CRC. Review steps in family history collection and risk assessment.

Collecting Sufficient Family History. Collect history that indicates family structure and manifestations of disease.
Documenting Family History Information. Record the collected family history in a way that is easy to read and update by anyone on the team.
Assessing Risk and Identifying Red Flags. Identify and synthesize risk factors including family and medical history, patient race or ethnicity and lifestyle, behaviors, and exposures.
Categorizing Cancer Risk. Stratify patient cancer risk into average, increased (moderate) or high risk to determine management and next steps.

Communicating Risk. Tailor conversations about levels of risk to patient learning styles and needs.
Manage Patient Based on Risk Level and Clinical Signs and Symptoms. Review steps in CRC evaluation and management of patients at increased risk.
Using Family History to Inform Management. Determine a personalized management plan based on personal and family history assessment.
Referring to a Genetic Expert. Refer high risk patients to a genetic expert for comprehensive cancer risk assessment, genetic counseling, and genetic testing.
Evaluating the Symptomatic Individual for CRC. Evaluate for CRC in patients presenting with alarm signs and symptoms. 
Educating the Patient about Risk Factors and Cancer Prevention. Inform patients about CRC risk factors and the signs and symptoms of cancer.

Chapter 4 Key Messages and Limitations of the Toolkit

Key Points from the Toolkit
Limitations of the Toolkit

Chapter 5 Appendix
Printable Forms and Worksheets

Goals Worksheet. Work through goal setting with stakeholders in the practice.
Family History Tool Features Worksheet. Identify family history tools that include desired features and functions.
Colorectal Cancer Risk Assessment Checklist. Stratify patients into average, increased, and high risk using a guidelines-based checklist.
Simple Family History Screening Tool for CRC. Identify patients who may benefit from genetic referral or increased risk CRC screening using a published patient questionnaire.
Accessing Genetic Services Tool. Communicate with patients about a genetic referral and find local genetic professionals.


Professional Society Guidelines. Access guidelines about CRC screening for individuals at increased risk of CRC.
Provider Education Resources. Access additional education about family history collection, cancer risk assessment, and cancer screening and management.
Patient Education Materials. Access patient materials that address family history, cancer risk factors, genetic counseling and genetic testing, CRC screening, and advocacy groups.
Best Practices. Review best practices in family history collection and risk assessment in primary care.



This toolkit was supported by the Grant or Cooperative Agreement Number, DP004969-04, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily rep- resent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.


For questions about this toolkit, please contact ccep@jax.org.