BDSRA Australia Family Register form


The information collected in this form is kept STRICTLY CONFIDENTIAL. 


ABOUT THE FAMILY REGISTER - Australia and NZ

The BDSRA Australia Family Register is a confidential contact database that enables us to keep you informed of ongoing Batten disease research, including future research opportunities.

The register also enables BDSRA Australia to better understand the prevalence of Batten disease in our region, including the different subtypes and geographical locations. This helps us tailor our education and support activities according to the needs of our families.

Your involvement is entirely voluntary, and you may request to be removed from the list at any time by contacting BDSRA Australia at research@bdsraaustralia.org.

If you have any questions in relation to this form, please don't hesitate to contact Dr Ineka Whiteman, Head of Research and Medical Affairs at research@bdsraaustralia.org.

Thank you for your time. 

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Parent/Guardian 1 Surname *
Parent/Guardian 1 Given Name(s) *
Parent/Guardian 2 Surname
Parent/Guardian 2 Given Name(s)
Home Address - Street Address
 *
Home Address - Suburb/city 
 *
Home Address - State
 *
Home Address - Postcode
 *
Home Address - Country
 *
Mobile phone number
Alternate phone number
Email
 *
How many children* in total in your family (including affected and unaffected children)?
(* including children over 18 yrs)
 *
How many children* in your family are affected by Batten disease?
(* including children over 18 yrs)
 *
Affected child/children's full name (if more than one affected child, please list oldest child first)
Affected child's Date of Birth (if more than one affected child, please add oldest child first - Child 1) *
MM
/
DD
/
YYYY
If more than one affected child, please list Date of Birth (Child 2)
MM
/
DD
/
YYYY
What is your child/children’s Batten disease subtype?
 *
Please state date of diagnosis (if known) Child 1
MM
/
DD
/
YYYY
If more than one affected child, please state date of diagnosis (Child 2)
MM
/
DD
/
YYYY
What is the number of surviving affected children in your family? *

From time to time, opportunities arise for children and families affected by Batten disease to participate in research projects and/or clinical trials. 

Do you consent to BDSRA Australia contacting you to discuss any relevant potential research/trial opportunities, should they arise? 

 *
Would you like to receive additional notifications from BDSRA Australia regarding general research updates, upcoming events, support resources and quarterly newsletters? (typically, we only send emails 1-2 times per month) *
If you wish to provide any further comments or feedback, please do so here: 
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