Screening Form for Wilson disease – 230506
Name
*
First Name
Last Name
Email
*
example@example.com
Phone Number
*
-
Area Code
Phone Number
Exafield Formalities:
The interview will be video &/or audio taped & the recordings will be used for quality checking, internal training & analysis purposes only.
Everything you say will be completely anonymous and you give your consent for your audio to be passed to the client.
We are required by BHBIA to report any Adverse Events that may arise during the discussion.
By returning this email, I consent to Exafield collecting and using the information about me that I voluntarily provide for the purposes of market research only.
That I have read, understand, and agree to the terms described above.
Do you wish to proceed?
Yes
No
S1. Which of the following options describes your current role?
*
Patient
Caregiver
S2. Which of the following conditions have you [IF patient] / has the person you care for [IF caregiver] been diagnosed with by a doctor?
*
Non-alcoholic steatohepatitis
Alzheimer’s disease
Wagner syndrome
Achondroplasia
Wilson disease
None of the above
S3. When did you [IF patient] / the person you care for [IF caregiver] get diagnosed with Wilsons Disease?
*
Rows
Month
Year
No.
S4. What is your age [IF patient] / the age of the person you care for [IF caregiver]?
Years
S5. Which of the following symptoms did you [IF patient] / the person you care for [IF caregiver] initially present with?
*
Abdominal pain
Cirrhosis
Acute liver failure
Abnormal liver function tests
Balance issues
Depression
Stiffness
Gait/balance issues
Neuropsychiatric symptoms
None, but family history
Other (please specify)
S6. Which of the following best describes how your physician considers the severity of your Wilson disease [IF patient] / Wilson disease of the person you care for [IF caregiver]?
*
Mild
Moderate
Severe
Very severe
Unsure
S7. Which of the following treatments have you [IF patient] / has the person you care for [IF caregiver] ever taken for Wilson Disease?
*
Penicillamine
Trientine
Zinc salts
Never taken any medication
Other (please specify)
S8. Have you [IF patient] / has the person you care for [IF caregiver] received or been recommended for liver transplant?
*
Yes
No
S9. How would you describe the impact of Wilson Disease on your life [IF patient] / the life of the person you care for [IF caregiver]? Please select from options below.
*
No impact, ability to live life freely
Little impact
Moderate impact, minor limitations
Significant impact
Extreme impact, debilitating, in need of caregiver
S10.Are you [IF patient] / is the person you care for [IF caregiver] currently employed by any of the following?
*
Pharmaceutical manufacturer or contract research organization (CRO)
Medical equipment manufacturer
Market research or advertising firm
FDA or other Government Agency
None of the above
Submit
Should be Empty: