Note: This form will close at
11:59 PM EST on Sunday, February 1, 2026. If you would like BDSRA to have specific feedback on your experience before the next Community Needs Assessment, please email Heather@BDSRAfoundation.org.
Hello patients, parents, guardians and primary caregivers in our Batten community. Thank you for participating in our survey to explore the needs of Batten families living around the world.
More than 1 person per household may complete this survey; however, we ask that only patients, parents, guardians, and adults in a primary caregiving role complete the survey. This is a comprehensive survey, and it is possible that some questions will not apply to you and your family or may make you feel uncomfortable answering. If so, simply select “Not Applicable” or “Not sure” to continue on with the survey.
While we would like as much information as possible for this important project, we know that some topics are sensitive in nature.
We assure you that your responses to this survey will be kept strictly confidential. This survey may take anywhere from 30 to 60 minutes to complete. Questions range from general demographic information to specific questions related to Batten disease. Your participation is greatly appreciated.
Purpose
The purpose of this survey is to learn about the experiences of those caring for themselves or a loved one diagnosed with Batten disease. Your responses to these survey questions will provide us with important information regarding the needs of families affected by Batten disease. This information will help to shape future programs and services offered by the Batten Disease Support, Research, and Advocacy Foundation (BDSRA).
Risks and Benefits
There is always the chance of emotional stress when entering into discussions about family and medical issues. Our aim is to minimize this risk as much as possible. You can skip any question to move ahead in the survey if you feel uncomfortable.
The benefits of this survey are mostly indirect; however, you will have the opportunity to share your thoughts and feelings about living with a Batten disease diagnosis. The data generated will help develop Support, Research, and Advocacy programs important to families currently living with a Batten disease diagnosis and for those who are bereaved.
Consent
Your responses will be kept completely confidential. We will not know your IP address (IP address stands for Internet Protocol address, a numeric label assigned to your computer) when you respond to our online survey. We will not connect your email address to your survey, and we will not ask for any information that can identify you.
Your participation is entirely voluntary, and it will have no effect on the services you currently receive from BDSRA. You may decline to answer any or all questions asked. You can withdraw from the survey at any time. If you understand what we've explained and agree to participate in the survey, please continue to the survey questions after clicking the consent button below.
