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This anonymous survey will help AlphaNet Canada evaluate whether a confidential genetic testing pathway encourages family discussions about Alpha-1 Antitrypsin Deficiency.

Thank you for helping us better understand the impact of confidential genetic testing. Your responses are important in determining whether this approach encourages families to have conversations about Alpha-1 Antitrypsin Deficiency (AATD) and inspires more relatives to participate in genetic screening. By sharing your experience, you are helping us improve future family screening initiatives and reach more individuals who may benefit from early identification.
1.Which of the following best describes you?
2.If you are living with AATD, approximately how long ago were you diagnosed?
3.Have you had an AATD serum level test (blood test)?
4.Has your diagnosis of AATD been confirmed through genetic testing?
5.Are you affected by AATD-related lung disease?
6.Are you currently receiving augmentation therapy?
7.Are you affected by AATD-related liver disease?
8.Have you had any liver-related monitoring for AATD in the past 12 months (e.g., blood tests, ultrasound or FibroScan)?
9.Have any of your biological family members been tested for AATD?
10.Do you have known first-degree relatives (parent, sibling, or child) who have been diagnosed with AATD?
11.Have you ever discussed AATD genetic testing with your biological relatives?
12.If there were a confidential AATD genetic testing option, how likely are you to discuss genetic testing with your at-risk family members?
Much more likely
Somewhat more likely
No change
Somewhat less likely
Much less likely
13.Do concerns about privacy or confidentiality influence whether you discuss AATD genetic testing with family members?
14.How many relatives have you spoken with about AATD and testing considerations?
15.To what extent do you agree with the following statement?
"Having access to confidential AATD genetic testing makes me more comfortable encouraging my family members to be tested."
Strongly agree
Agree
Neutral
Disagree
Strongly disagree
16.What has been the biggest barrier to discussing AATD genetic testing with your family? (Select all that apply)
17.Which of the following age categories best describes you?
18.Which of the following best represents your gender identity?
19.What would you consider a reasonable out-of-pocket cost for confidential AATD genetic testing?
To learn more about Alpha-1 Antitrypsin Deficiency, visit www.alphanetcanada.ca