information. Q1 Please provide your contact · 2018-06-27 · Q1 Please provide your contact...

100.00% 1,014

0.00% 0

0.00% 0

0.00% 0

0.00% 0

0.00% 0

100.00% 1,014

0.00% 0

100.00% 1,014

0.00% 0

Q1 Please provide your contactinformation.

Answered: 1,014 Skipped: 0

Answer Choices Responses

Name:

Company:

Address:

Address 2:

City/Town:

State:

ZIP:

Country:

Email Address:

Phone Number:

1 / 24

CDF Celiac Patient-Focused Drug Development Survey - Help CDF Make YourVoice Heard at the May 11, 2015 FDA Gastrointestinal Drug DevelopmentMeeting

SurveyMonkey

88.17% 894

11.24% 114

0.59% 6

Q2 What is your gender?Answered: 1,014 Skipped: 0

Total 1,014

Female

Male

Prefer not toanswer

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Female

Male

Prefer not to answer

2 / 24


SurveyMonkey

6.21% 63

15.88% 161

46.25% 469

24.85% 252

6.21% 63

0.59% 6

Q3 In what category is your age?Answered: 1,014 Skipped: 0

Total 1,014

17 or younger

18-30

31-50

51-64

65 or older

Prefer not toanswer

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


17 or younger

18-30

31-50

51-64

65 or older

Prefer not to answer

3 / 24


SurveyMonkey

90.34% 916

9.66% 98

Q4 Have you received a diagnosis of celiacdisease from a healthcare provider?


Total 1,014

Yes

No

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Yes

No

4 / 24


SurveyMonkey

5.03% 51

20.61% 209

13.02% 132

7.79% 79

8.09% 82

45.46% 461

Q5 How long did it take from your firstsymptoms to receive a diagnosis?


Total 1,014

Not Diagnosed

0 to 1 Year

1 Year to 2Years

2 Years to 3Years

3 Years to 5Years

More than 5Years

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Not Diagnosed

0 to 1 Year

1 Year to 2 Years

2 Years to 3 Years

3 Years to 5 Years

More than 5 Years

5 / 24


SurveyMonkey

Q6 What year were you diagnosed?Answered: 945 Skipped: 69

6 / 24


SurveyMonkey

Q7 Of all the symptoms that you experiencebecause of celiac disease, which 1-3

symptoms have the most significant impacton your life?


Abdominal pain

Fatigue

Chronicdiarrhea

Bloating

Difficultythinking...

Depression oranxiety

Bone or jointpain

Constipation

Flatulence(gas)

Headache

DermatitisHerpetiformi...

Nausea

Unexplainediron-deficie...

Seizures ormigraines

Weight loss

Vomiting

Arthritis

Bone loss orosteoporosis

7 / 24


SurveyMonkey

48.32% 490

47.53% 482

35.11% 356

30.37% 308

29.29% 297

25.74% 261

23.47% 238

19.92% 202

19.92% 202

17.95% 182

15.48% 157

15.29% 155

14.40% 146

11.54% 117

11.05% 112

9.86% 100

8.38% 85

8.28% 84

7.20% 73

5.62% 57

osteoporosis

Canker soresinside the...

Infertility orrecurrent...

Missedmenstrual...

My symptoms donot impact m...

I have nosymptoms

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Abdominal pain

Fatigue

Chronic diarrhea

Bloating

Difficulty thinking clearly (brain fog)

Depression or anxiety

Bone or joint pain

Constipation

Flatulence (gas)

Headache

Dermatitis Herpetiformis or skin rash

Nausea

Unexplained iron-deficiency anemia

Seizures or migraines

Weight loss

Vomiting

Arthritis

Bone loss or osteoporosis

Canker sores inside the mouth

Infertility or recurrent miscarriage

8 / 24


SurveyMonkey

3.94% 40

1.48% 15

1.48% 15

Total Respondents: 1,014

Missed menstrual periods

My symptoms do not impact my life

I have no symptoms

9 / 24


SurveyMonkey

55.62% 564

44.38% 450

Q8 Are there specific activities that areimportant to you but that you cannot do atall or as fully as you would like because ofceliac disease? If so, please list them in the

comments section.Answered: 1,014 Skipped: 0

Total 1,014

Yes

No

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Yes

No

10 / 24


SurveyMonkey

82.94% 841

63.02% 639

56.80% 576

42.21% 428

41.62% 422

39.64% 402

38.17% 387

36.88% 374

Q9 How do your symptoms and theirnegative impacts affect your daily life?


I feel limitedin eating...

The high costof gluten-fr...

It isdifficult to...

I feel unableto attend...

I feel limitedby the disease

I have missedwork...

I feelmisunderstoo...

I feelsocially...

I feel like Ithink about...

I feeloverwhelmed...

My daily lifeis not impacted

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


I feel limited in eating outside of my home

The high cost of gluten-free foods is a financial burden in my life

It is difficult to travel/take long trips because of celiac disease

I feel unable to attend social gatherings with friends and family

I feel limited by the disease

I have missed work days/school days due to illness from eating gluten

I feel misunderstood by my friends/family/significant other

I feel socially stigmatized for having the disease

11 / 24


SurveyMonkey

34.81% 353

20.61% 209

3.75% 38


I feel like I think about food all the time

I feel overwhelmed about having celiac disease

My daily life is not impacted

12 / 24


SurveyMonkey

82.84% 840

9.37% 95

3.94% 40

3.06% 31

2.47% 25

Q10 How have your symptoms changedover time?



My symptomshave improve...

My symptomshave remaine...

My symptomshave gotten...

I have notadopted the...

I do not havesymptoms

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


My symptoms have improved on the gluten-free diet

My symptoms have remained the same since I adopted a gluten-free diet

My symptoms have gotten worse since adopting the gluten-free diet

I have not adopted the gluten-free diet to treat my symptoms

I do not have symptoms

13 / 24


SurveyMonkey

59.57% 604

28.50% 289

11.93% 121

Q11 Do your symptoms come and go or arethey ongoing?


Total 1,014

Come and go

Ongoing

I have nosymptoms

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Come and go

Ongoing

I have no symptoms

14 / 24


SurveyMonkey

27.12% 275

31.95% 324

12.92% 131

11.74% 119

6.80% 69

8.38% 85

5.62% 57

Q12 For how long do you feel negativesymptoms if you've been exposed to

gluten?Answered: 1,014 Skipped: 0


1-2 days

3-4 days

5-6 days

7-10 days

10-14 days

More than 14days

I do not feelnegative...

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


1-2 days

3-4 days

5-6 days

7-10 days

10-14 days

More than 14 days

I do not feel negative symptoms

15 / 24


SurveyMonkey

70.91% 719

66.57% 675

45.66% 463

39.55% 401

30.37% 308

14.99% 152

3.35% 34

1.18% 12

Q13 What worries you most about havingceliac disease?



I am concernedthat celiac...

I am concernedthat my...

I am worriedabout the...

I am worriedabout the...

I feel thatceliac disea...

I feel I don'tknow enough...

I have noworries abou...

I do not haveceliac disease

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


I am concerned that celiac disease will cause other health problems

I am concerned that my long-term health will be affected by celiac disease

I am worried about the increased risk of cancer

I am worried about the increased risk of a family member having celiac disease

I feel that celiac disease is incurable

I feel I don't know enough about celiac disease

I have no worries about having celiac disease

I do not have celiac disease

16 / 24


SurveyMonkey

92.70% 940

7.30% 74

Q14 Have you adopted a strict gluten-freediet?


Total 1,014

Yes

No

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Yes

No

17 / 24


SurveyMonkey

42.90% 435

64.99% 659

77.81% 789

33.83% 343

8.78% 89

Q15 What are the barriers to adopting astrict gluten-free diet?



Access togluten-free...

Cost

Difficultydining out

Taste

There are nobarriers

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Access to gluten-free foods

Cost

Difficulty dining out

Taste

There are no barriers

18 / 24


SurveyMonkey

Q16 What specific symptoms does thegluten-free diet mitigate for you?


Abdominal pain

Arthritis

Bloating

Bone or jointpain

Bone loss orosteoporosis

Canker soresinside the...

Chronicdiarrhea

Constipation

Depression oranxiety

DermatitisHerpetiformi...

Difficultythinking...

Fatigue

Flatulence(gas)

Headache

Infertility orrecurrent...

Missedmenstrual...

Nausea

Seizures ormigraines

Unexplained

19 / 24


SurveyMonkey

63.41% 643

9.66% 98

51.18% 519

27.12% 275

7.50% 76

16.37% 166

43.79% 444

26.13% 265

27.42% 278

20.51% 208

36.09% 366

44.08% 447

34.52% 350

31.26% 317

4.14% 42

5.62% 57

27.02% 274

13.51% 137

17.95% 182

14.99% 152

14.79% 150

5.82% 59

iron-deficie...

Vomiting

Weight loss

The diet doesnot mitigate...

I have notadopted a...

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Abdominal pain

Arthritis

Bloating

Bone or joint pain

Bone loss or osteoporosis

Canker sores inside the mouth

Chronic diarrhea

Constipation

Depression or anxiety

Dermatitis Herpetiformis or skin rash

Difficulty thinking clearly (brain fog)

Fatigue

Flatulence (gas)

Headache

Infertility or recurrent miscarriage

Missed menstrual periods

Nausea

Seizures or migraines

Unexplained iron-deficiency anemia

Vomiting

Weight loss

The diet does not mitigate any of my symptoms

20 / 24


SurveyMonkey

2.27% 23


I have not adopted a gluten-free diet

21 / 24


SurveyMonkey

35.40% 359

32.84% 333

20.41% 207

4.34% 44

3.65% 37

3.35% 34

Q17 On a scale from 1-5, with 1 being notwell and 5 being very well, how well does

the gluten-free diet treat your mostsignificant symptoms?


Total 1,014

5

4

3

2

1


0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


5

4

3

2

1


22 / 24


SurveyMonkey

31.36% 318

30.57% 310

23.67% 240

6.21% 63

4.73% 48

3.45% 35

Q18 On a scale from 1-5, with 1 being notwell and 5 being very well, how well doesthe gluten-free diet improve your ability todo specific activities that are important to

you in your daily life?Answered: 1,014 Skipped: 0

Total 1,014

5

4

3

2

1


0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


5

4

3

2

1


23 / 24


SurveyMonkey

75.15% 762

42.50% 431

41.52% 421

6.02% 61

0.59% 6

Q19 Assuming there is no complete cure forceliac disease, what specific things wouldyou look for in an ideal treatment for your

condition?Answered: 1,014 Skipped: 0


A backup planwhen I get...

Symptomimprovement ...

Ability to eatgluten whene...

I am notinterested i...

I am notinterested i...

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


A backup plan when I get exposed to gluten accidentally to mitigate symptoms

Symptom improvement for my ongoing symptoms that haven't improved on the gluten-free diet

Ability to eat gluten whenever I wanted without symptoms

I am not interested in a treatment for celiac disease other than a strict gluten-free diet

I am not interested in a treatment for celiac disease

24 / 24


SurveyMonkey

information. Q1 Please provide your contact · 2018-06-27 · Q1 Please provide your contact...

Documents

Transcript of information. Q1 Please provide your contact · 2018-06-27 · Q1 Please provide your contact...