Consumer Evaluation of the Genetics Information Sheets Survey

1. Overall did you find your Genetics Information Sheet easy to read?

Overall did you find your Genetics Information Sheet easy to read? Yes

Unsure

2. Did the Genetics Information Sheet provide you with the information you were seeking?

Did the Genetics Information Sheet provide you with the information you were seeking? Yes

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If no, what other information were you seeking?

3. How confident are you in the accuracy of information in your Genetics Information Sheet?

How confident are you in the accuracy of information in your Genetics Information Sheet? Very Confident

Somewhat Confident

Not Confident

Unsure

4. How useful did you find each section in your Genetics Information Sheet?

	Not useful at all	Not very useful	Neutral	Fairly useful	Very useful
General information about the condition	*How useful did you find each section in your Genetics Information Sheet? General information about the condition Not useful at all	General information about the condition Not very useful	General information about the condition Neutral	General information about the condition Fairly useful	General information about the condition Very useful
The cause of the condition	The cause of the condition Not useful at all	The cause of the condition Not very useful	The cause of the condition Neutral	The cause of the condition Fairly useful	The cause of the condition Very useful
The genetics and inheritance	The genetics and inheritance Not useful at all	The genetics and inheritance Not very useful	The genetics and inheritance Neutral	The genetics and inheritance Fairly useful	The genetics and inheritance Very useful
Diagnosis and treatment	Diagnosis and treatment Not useful at all	Diagnosis and treatment Not very useful	Diagnosis and treatment Neutral	Diagnosis and treatment Fairly useful	Diagnosis and treatment Very useful
More information and support	More information and support Not useful at all	More information and support Not very useful	More information and support Neutral	More information and support Fairly useful	More information and support Very useful

5. When you received a Genetics Information Sheet, how did you use it? (please tick all relevant answers)

When you received a Genetics Information Sheet, how did you use it? (please tick all relevant answers) For my own information (for a genetic condition in my immediate family)

For my own information (a person I know has a genetic condition)

For educational purposes (for family members, relatives and friends)

For educational purposes (to show teachers, carers, medical professionals)

6. Did you receive any Genetics Fact Sheets with your Genetics Information Sheet? Genetics Fact Sheets are general fact sheets on human genetics and patterns of inheritance that are referred to at the top and throughout the Genetics Information Sheets.

Did you receive any Genetics Fact Sheets with your Genetics Information Sheet? Genetics Fact Sheets are general fact sheets on human genetics and patterns of inheritance that are referred to at the top and throughout the Genetics Information Sheets. Yes

Unsure

7. Were you satisfied with the response time in receiving your Genetics Information Sheet?

Were you satisfied with the response time in receiving your Genetics Information Sheet? Very satisfied

Somewhat satisfied

Unsatisfied

8. What do you believe would be an appropriate time frame for receiving a Genetics Information Sheet?

What do you believe would be an appropriate time frame for receiving a Genetics Information Sheet? Less than 5 business days

5 - 10 business days

10 - 15 business days

More than 15 business days

Unsure

9. Other than information provided to you from the Association of Genetic Support of Australasia (AGSA) what other sources of information have you used? (Please tick all relevant answers)

Other than information provided to you from the Association of Genetic Support of Australasia (AGSA) what other sources of information have you used? (Please tick all relevant answers) No other sources of information

GeneTests (GeneReviews)

Genetics Home Reference

Online Mendelian Inheritance in Man (OMIM)

National Organisation for Rare Diseases (NORD)

Google Scholar

Search Engines (Google, Bing, Yahoo)

Specific support groups

Other (please specify)

10. In the space below please provide and further comments or suggestions that you may have.

In the space below please provide and further comments or suggestions that you may have.

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Consumer Evaluation of the Genetics Information Sheets
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