children with DIABETES - CWD Cure and Care Survey

The purpose of this survey is to learn how parents and families of children with diabetes view the progress being made in diabetes treatment today, what about life with diabetes they find most difficult to cope with, and how they would like to see diabetes research funding allocated.

1. How many children do you have with diabetes?

One
Two
Three
More than three

2. In what country do you live?

United States
Canada
Mexico
Other (specify)

3. The ages of my child/children with diabetes are: (indicate all that apply)

Under four
Four to eight
Eight to twelve
Over twelve

4. In what year was your child diagnosed with diabetes?

Year(s):

5. My child's last A1c result was:
6. Life with diabetes is very challenging. What do you find most challenging about life with diabetes? Please rate each of the following aspects of life with diabetes on a scale of 1 to 3 (1 = most challenging, 2 = somewhat challenging, 3 = not too challenging, 4 = not challenging)

	1	2	3	4
Maintaining optimal blood glucose levels
Insulin dosing
Carbohydrate counting/meal planning
Hyperglycemia (high blood sugars)
Hypoglycemia (low blood sugars)
Managing complications
Exercise and sports
Depression/frustration
My child feels "different" from his/her peers
Finding a good doctor and/or diabetes educator
Dealing with my child's teacher or school with regard to his/her diabetes

7. Overall, I find it hard to manage life with a child/children with diabetes.
8. At the time your child was diagnosed, how far away did you think a cure would be?

Less than two years
Two to five years
Five to ten years
More than ten years

9. How many years do you think we are from a cure today?

Less than two years
Two to five years
Five to ten years
More than ten years

10. How do you think type 1 diabetes will be cured?

Islet cell transplants without lifelong immunosuppression (cells having been encapsulated or otherwise permanently protected)
Gene therapy
Immune system therapy
A combination of the above
Something else (please fill in)
I am sure there will be a cure, but I have no sense of what it will be
I don't think it will be cured [If this is your answer, please proceed to question 11.]

11. If you don't think that diabetes will be cured, what do you think will be achieved?

A vaccine to prevent type 1 diabetes from occurring in future generations
A closed-loop insulin pump and continuous sensor (an artificial pancreas)
Nothing. I can see no further innovations being made in the treatment of type 1 diabetes beyond what is available today

12. If you had a significant amount of money to donate to diabetes research, how want the money to be spent? (Check all that apply)

Continuous monitoring, so you and your child could see real-time blood glucose levels and directional arrows indicating if blood glucose is going up, down, or staying the same
Developing artificial pancreas technology
Islet cell transplantation
Development of more effective anti-rejection/immunosuppressive drugs with fewer side effects for use in islet cell transplantation
Beta cell regeneration (promoting the function of any surviving insulin-making cells in your child's pancreas and/or causing the body to make new insulin-producing cells)
Preventing complications
Preventing new diabetes onset in the general population
Other

13. On a percentage basis, how do you think all the money in the world that is available for diabetes should be spent across the following areas? (Please make sure the total equals 100%)

Continuous monitoring, so you and your child could see real-time blood glucose levels and directional arrows indicating if blood glucose is going up, down, or staying the same
Developing artificial pancreas technology
Islet cell transplantation, including the development of more effective anti-rejection/immunosuppressive drugs with fewer side effects
Beta cell regeneration (promoting the function of any surviving insulin-making cells in your child's pancreas and/or causing the body to make new insulin-producing cells)
Preventing complications
Preventing new diabetes onset in the general population

14. Overall, where do you think the most progress has been made to date regarding diabetes?

In the last 5 years
In the last 10 years

15. In what area(s) do you feel the most progress will be made in diabetes?

In the next 5 years
In the next 10 years

16. Overall, where do you think the least progress has been made to date regarding diabetes?

In the last 5 years
In the last 10 years

17. Overall, where do you think the least progress will be made regarding diabetes?

In the next 5 years
In the next 10 years

18. Do you feel it's more important to improve day-to-day life with diabetes or to find a cure?

Improve day-to-day life
Find a cure

19. On a scale of 1 to 5 (1 = very optimistic, 5 = not optimistic), how optimistic are you about the likelihood of a cure for type 1 diabetes arising from each of these areas of research? (Please choose one number following each item in the list below)

	very optimistic		not optimistic
	1	2	3	4	5
Islet cell transplantation
Beta cell regeneration
Gene therapy
Artificial pancreas
Preventing diabetes in future generations through a vaccine

20. If you could send a message to researchers in any area of diabetes treatment or prevention, what would you say?

21. If you'd like a summary of the results of this survey, please provide your name and email address.

Name
Email address
Confirm email address

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