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Servey Online
 As requested, we have generated an online version of both the family and education surveys to generate data for the Brineura re-submission process.
The format we have used allows us rights over the data but unfortunately means you cannot save your progress, although you shouldn’t get logged out if you complete it over a period of time.
The family survey takes approximately 30-40 minutes while the education version takes about 20 minutes.  
If you encounter any issues please let us know.
Here are the links:
Scan the QR or use link to join the Family survey
Scan the QR or use link to join the Education survey
 Our submission is in January 2024, so we are asking you to return these by November 17th.

If you have any queries regarding any of the questions, or need help understanding the information we are interested in, please contact Jo directly ( who will be available to help. If you need support due to the nature of the questions, please contact Sarah Kenrick ( who is also available to assist you with the questions.
If you have any problems accessing these surveys, please let us know ( and we will arrange for you to receive a copy in another format you can process.
In addition to your answers to these surveys, we would encourage you to send us photos and videos of your children living their lives. We are planning to create a video of the children to demonstrate your experiences.
Many thanks
Dr Jo Nightingale
Head of Scientific Affairs

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