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Home
Why Register?
About Us
FAQs
Research
Contact us
Registration
First Name
Family ID
Username
*
User Password
*
Last Name
Is this the primary contact?
Yes
No
User Email
*
Confirm Password
*
Alternate Contact Full Name
Alternate Contact Phone
address
City
State
zip
Home Phone
Cell Phone
Other Phone
Birthday
Select your birthday
Race of primary
Choose
White
Black
Asian
Other - please specify
If other specify:
Gender?
Select gender:
Male
Female
Which hand were you born to write with?
Choose
Right
Left
Do you have any relatives with Dystonia?
No
Yes
If
Choose from list
Siblings
Mother
Father
Grandmother
Grandfather
Aunt
Uncle
Cousins
Son
Daughter
If
Choose
No
Yes
Do you have Dystonia symptoms?
Choose
No
Yes
What year did your Dystonia symptoms begin? (yyyy)
At what age were you when the Dystonia symptoms began?
Where were the first symptoms? (Check all that apply)
Right side of head above nose/ear
Left side of head above nose/ear
Right side of head below nose/ear
Left side of head below nose/ear
Neck
Right hand
Right arm
Left hand
Left arm
Trunk
Right leg
Left leg
Right foot
Left foot
Have you been tested for the DYT1 gene or any other genetic form of dystonia?
Choose
No
Yes
If so what genetic forms were you tested for?
Choose from list:
DYT1
DYT2
DYT3
DYT4
DYT5
DYT6
DYT7
DYT8
DYT9
DYT10
DYT11
DYT12
DYT13
DYT14
DYT15
DYT16
DYT17
DYT18
DYT19
DYT20
PANK1
PANK2
What was the result of your genetic test?
Positive
Negative
Non-Specified
Where were you diagnosed? (city / clinic or hospital / lab)
What Form of Dystonia do you have?
Choose one
Focal (single body part)
Segmental (one or more contigous body parts)
Multifocal (2 or more non-contiguous body parts)
Hemidystonia (only half of the body)
Generalized (entire body)
What Type of Dystonia do you have?
Choose one
Continual: Primary
Continual: Secondary
Fluctuating
Location of your Dystonia symptoms now?
Choose from list
Right side of the head above nose/ear
Left side of the head above nose/ear
Right side of head below nose/ear
Left side of head below nose/ear
Neck
Right hand
Right arm
Left hand
Left arm
Trunk
Right leg
Left leg
Right foot
Left foot
What medications have you tried?
Artane (Trihexyphenidyl)
Cogentin (Benztropine)
Klonapin (Clonazepam)
Lioresal (Baciofen)
Parlodel (Bromocriptine)
Sinemet (Carbidopa/Levodopa)
Valium (Diazepam)
Zanaflex (Tizanidine)
Tetrabenazine (also has a trade name now)
What other treatments have you tried?
Have you had Deep Brain Stimulation Surgery (DBS)?
Select
No
Yes
If
Where was DBS performed?
Do we have permission o contact you for clinical trials?
Choose
No
Yes
Submit
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