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Family Registration
Family Registration
Welcome, and thank you for registering with The SADS Foundation! Please feel free to ask any questions you have and also let us know what further information you might want. By registering with SADS you help us to personalize and improve our services to you and your family. We also can use your deidentified information to encourage vital research in the scientific community to help stop SADS. All of your information is kept confidential and will not be released to 3rd parties – see our
privacy policy
for more information.
Your Contact Information
*= required fields
*First Name:
*Last Name:
*Street Address:
*Email Address:
*City:
*State or Province:
*Zip/Postal Code:
*Country:
*Phone Number:
*Phone Type:
Home
Cell
Work
*Do you have an SADS Condition?:
Yes
No
If you selected "No" please enter the name of the affected below:
Relationship to affected - choose all that apply (hold down shift key to choose more than one):
Choose all that apply
My child is affected
My spouse/partner is affected
Another family member is affected
I lost someone who was affected
Please fill out for you (if affected) or the Affected Family Member
*Gender:
Female
Male
Non-Binary
Other
If you selected other, please specify:
*Date of Birth:
*Were you the first person in your family to be diagnosed?:
Yes
No
Year you were diagnosed:
*Does the affected have an ICD?:
Yes
No
*Have you been genetically tested for SADS:
Yes
No
*Race/Ethnicity:
White
Hispanic or Latinx
Black or African American
Native American or American Indian
Asian/ Pacific Islander
Other not listed
If you selected other, please specify:
SADS Condition
Does affected have Arrhythmogenic right ventricular dysplasia (ARVD) or arrhythmogenic right ventricular cardiomyopathy (ARVC)?:
Yes
No
Mutation Type - choose all that apply (hold down shift key to choose more than one):
Choose all that apply
PKP2
DSG2
DSC2
DSP
PLN
JUP
Unknown
Other
If you selected other, please specify:
Have you had a heart transplant or are you transplant eligible?:
Yes
No
Does affected have Long QT Syndrome (LQTS)?:
Yes
No
What type? (hold down shift key to choose more than one):
Choose all that apply
Jervall Lange-Nielson Syndrome (LQT inherit from both parents)
LQT, Type 1
LQT, Type 2
LQT, Type 3
LQT Type 7 (Anderson Twail)
LQT Type 8 (Timothy Syndrome)
LQT, Other Type
If you selected other, please specify:
Does affected have Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)?:
Yes
No
Mutation Type - choose all that apply (hold down shift key to choose more than one):
RYR2
CASQ2
Other Type
If you selected other, please specify:
Does affected have Brugada Syndrome?:
Yes
No
Does affected have Short QT Syndrome?:
Yes
No
Does affected hav eWolff Parkinson White (WPW)?:
Yes
No
Other condtion not lisited:
Other Affected Family Members
Please list (name, age, and symptoms) other family members who are also affected (i.e. children, spouse, etc.):
Please list immediate family members (name, age at death, circumstances) who died suddenly or unexpectedly (including drowning, single car accident):
Tell us more about your family story:
*Sign me up for SADS eNews:
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Warning Signs
Family history of unexpected, unexplained sudden death under age 40.
Fainting or seizure during exercise, excitement or startle.
Consistent or unusual chest pain &/or shortness of breath during exercise.