Family Priorities Survey 2026

Families Priorities Survey 2026
CASK Research Foundation has teamed up with the Patient Led Research Hub (PLRH) at the University of Cambridge. Together, we aim to explore how the CASK global registry (RARE-X) can support new research which is most important to you.

To help shape this research project, please complete this quick (5-min), anonymous survey and let us know which areas of living with a CASK-related disorder you would like to learn more about.

This survey aims to gather research priorities from people with lived experience of CASK-related disorders. The responses will be used to inform future research, and also may be included in reports and publications composed by CASK Research. By completing this survey, you agree that your anonymised responses may be used in this manner.

By completing this survey, you agree that your anonymised responses may be used in this manner.

If you have any questions about this survey or the way responses will be used, please contact:

Laura Hattersley, Director, CASK Research Foundation: laura@caskresearch.org

Laura Cowley, Research Lead, Patient Led Research Hub: lbm28@cam.ac.uk
This survey is anonymous which means we cannot identify who you are from your responses. However, providing your child’s age and where they receive medical care will help us understand the range of research priorities.
Which country do you currently live in?

Street Address

Street Address Line 2

CityState / Province

Postal / Zip CodeCountry
What age bracket is your child with a CASK-disorder in?
Medical issues

Please rank the following in order of priority. 5 indicates that you feel this is the most important area and requires new research to support families. 1 indicates that you feel there is sufficient research or knowledge in this area already, or is less important to your family. N.B. You can rank multiple topics with the same number e.g. seizures '3', Vision '3'...
Seizures

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Vision

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Hearing

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Gastrointestinal issues (including constipation and reflux)

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Quality of life

Please rank the following in order of priority. 5 indicates that you feel this is the most important area and requires new research to support families. 1 indicates that you feel there is sufficient research or knowledge in this area already, or is less important to your family. N.B. You can rank multiple topics with the same number e.g. sleep '5', Pain '5'...
Sleep

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Communication (verbal and non-verbal)

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Pain

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Patient's quality of life

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Impact on siblings

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Impact on parents/guardians

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Behaviour and emotional regulation

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Educational support (e.g. are they in an appropriate school, do they have satisfactory education?)

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Development

Please rank the following in order of priority. 5 indicates that you feel this is the most important area and requires new research to support families. 1 indicates that you feel there is sufficient research or knowledge in this area already, or is less important to your family. N.B. You can rank multiple topics with the same number e.g. Mobility '1', Feeding '1'...
Mobility and movement

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Feeding issues

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Puberty

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Long-term outcomes (e.g. life expectancy, likelihood of regression, future independence)

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Growth and metabolism

1

2

3

4

5

1 is Low Priority, 5 is High Priority
Feedback

Optional
Please use this section to include up to 3 other areas of CASK-related disorders that you would like prioritised. Please ensure you include a rank (1-5) alongside each topic.
Should be Empty:

Families Priorities Survey 2026

Medical issues

Quality of life

Development

Feedback