Cohen Survey

We thank you for taking the time to complete this survey as this data will help professionals get more up to date information about Cohen Syndrome children. If you have more than one child with Cohen Syndrome please complete 1 survey for each child.

How old is your child *

1-5

6-10

10-15

15-20

20-25

25 +

Gender *

Male

Female

Has your child been diagnosed with Cohen Syndrome ? *

Yes

No

Do you have more that 1 child with Cohen Syndrome ? *

No (1 child with Cohen syndrome)

Yes ( 2 children with Cohen Syndrome)

Yes ( 3 or more children with Cohen Syndrome)

How was your child diagnosed *

Genetic screening

Clinical symptoms

Family Doctor

Has not been diagnosed

Other

If you answered other above please exlain:

What age was your child diagnosed with Cohen Syndrome ? *

1-3 years

4-7 years

8-11 years

12-15 years

16- 20 years

21+ years

Do you feel the diagnosis is correct ? *

Yes

No

How would you rate your childs overall health ? *

Minor health concerns

Medium health issues

My child has multiple health issues

No health concerns

If your child has multiple heath issues please explain below:

Has your child had serious illness *

Yes

No

If you answered yes to question above please explain:

What clinical symptoms impact your child ? Please check all boxes that apply: *

Vision ( progressive high myopia)

Vision ( night blindness or vision loss)

Vision (retinal dystrophy)

Hemotology ( confirmed neutropenia)

Frequent Illness

Low Muscle Tone ( AFO or bracings )

Dental( teeth removal)

Dental ( multiple fillings)

Dental ( teeth scalling)

Hyper activity /hand flapping, excitable)

Insomnia

Autistic type behaviors

Optional: provide any details that outline the medical challenges that you face above

Is your child verbal ? *

Yes

No

Can you describe how your child communicates their needs ?

If your child is non-verbal do you have a augmentive communication device ? *

Yes

No

If you answered yes to question above please explain:

Optional: what challenges do you face regarding medical services and general care for your child ?

What information would you like to see included in a future survey ?

Location: What country and city do you live in ? *

E mail address *