CETT: Collaboration Education and Test Translation Program
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Frequently Asked Questions Application Process Resources and Education Approved Tests Patient Privacy
Educational Materials Outline
Guidelines for developing CETT materials
Rationale
Guiding CETT principles
 Resources for developing other educational materials
Examples of CETT materials
Genetics terminology
Other resources March 2007 meeting

Guidelines for developing CETT materials

For each CETT-funded test, educational materials for two audiences must be developed:

1. families and clinicians with limited genetics training, and
2. genetics professionals (e.g., medical geneticists and genetic counselors).

The CETT Program will review these educational materials and provide feedback to the Collaborative Group before the materials are distributed or posted. Educational materials should be ready for distribution at the time that the test is released for clinical use. It is expected that all members of the collaborative group will distribute the educational materials and that those with a website will post the educational materials or link to their location.

Content Requirements

The educational materials should be focused in general on the genetic test, not the disease for which testing is provided. Disease-related information, including general information and management considerations, should be developed and presented independent of the test educational materials. Note: the CETT Program Staff are available to assist with the development of additional educational materials. A general guide to developing materials on rare disorders, including other topic areas, can be found at www.geneticalliance.org/atcg.

      Overall considerations
  • Limit the genetic test educational materials to 2 pages or less.
  • Provide key references for the information provided.
  • Provide resources for further information and/or support.
  • Provide the names of the persons who developed the materials.
  • Indicate the date of material creation and/or revision.
      Required content
       At a minimum, the following must be included:
  • An introductory short summary at the 6th to 8th grade reading level that includes the following:
    • Brief description of clinical condition including: concept of genetic disease, prevalence (rare), and 3-4 critical core disease characteristics.
    • Key information about testing
  • Information to help with genetic test ordering
    • Benefits and limitations
    • Indications (e.g., diagnostic, carrier testing, predictive testing for at risk family members, prognostic testing, prenatal diagnosis, preimplantation genetic diagnosis)
      • Implications for care and management decisions
      • Test sensitivity
    • Appropriate order in which individuals and family members should be tested (e.g., test the affected individual before at-risk relatives)
  • Practical information
    • Health professionals who can order genetic tests
    • Specimen type and amount
    • CPT codes (and cost, if possible)
    • Turnaround time for test results
  • Information to help understand the interpretation of possible test results that will be provided by the laboratory
    • Mode of inheritance of the condition for which testing was performed
    • Implications of test results (identifying 0, 1, or 2 mutations) related to indication of testing (e.g., establishing a diagnosis, confirming a diagnosis, identifying carriers, etc.).
      • Implications for prognostic information and treatment decisions
    • Variant of unknown significance
      • Define and follow-up procedures to clarify result
  • Patient eligibility for research studies
See Genetics Terminology
See Examples of CETT Educational Materials

  • What does genetic testing add to the clinical diagnosis?
    • Does it change treatment options, research eligibility, or prognostic information?
  • Are some mutations associated with fewer or milder symptoms?
  • How does the gene associated with the disease symptoms? How does the mutation cause the symptoms?
  • Is this condition more common in people with specific ethnic backgrounds? Do people with different ethnic backgrounds ever have this condition?
  • Once clinical testing becomes available, has the definition of disease changed (i.e., broadened in terms of range of severity and types of symptoms)? This can occur because a broader range of people may be eligible for testing.
Rationale

Educational materials are important for the appropriate use of genetic tests and for the facilitation of informed decisions about testing. Materials developed in the context of the CETT program should focus on information about genetic testing, as opposed to a general discussion of the condition. The development of educational materials should be a collaborative process among clinicians, patient advocates, and researchers to ensure that the information is appropriate and accessible to patients as well as health professionals.

Guiding CETT principles

  • Educational materials should be made available when the clinical test is released.
  • Separate educational materials should be created for patients/families and health professionals.
  • Educational materials should be created through a collaborative effort that includes input from patient organizations as well as researchers and clinical experts.
Resources for developing other educational materials

You may be interested in developing additional materials that discuss other aspects of the condition in more detail, such as management or natural history. It is often more useful to create a number of separate materials, each on a different topic (e.g. general information, treatment, and research) rather than a single material that tries to cover all the topics.

Genetics 101
Developing Educational Materials
Examples of CETT Educational Materials

Genetic Terminology

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