1. Vitiligo Online Survey

Dear Patient:

This survey is a research study designed to gather information regarding vitiligo. Vitiligo is a disorder in which color or pigment is lost in the skin. Patients who are 18 years or older who have been diagnosed with vitiligo vulgaris that has been diagnosed by a dermatologist may participate, if they desire to participate. All of the data obtained will be de-identified. This means that none of your personal information will be shared, outside of grouped information regarding all the survey responses.

Study data will be collated and responses will be stored at the Department of Dermatology, St. Luke’s-Roosevelt Hospital Center, 1090 Amsterdam Avenue, Suite 11D, NY, NY 10025.

If you have any questions regarding this study, please contact Dr. Nanette Silverberg at nsilverb@chpnet.org or call (212) 523-3888

For participants in the survey/ questionnaire:

Please complete this survey to the best of your ability. If you are unable or do not wish to answer any question, please leave the response area blank. Complete only the questions which you are comfortable completing. DO NOT write your full name, address or any other personal information other than that requested..

* 1. Please give us your initials so that we avoid double recording of responses. If you have been a special subject number from another survey, please write that in here.

* 3. 1. What is your age?* (please write how old you are in years and months, e.g.21 years 3 months)

* (If you are under 18 years of age have your parent complete the child survey with you)

* 4. What is your sex?

* 5. How do you describe yourself?

* 6. 1.Have you ever been diagnosed with vitiligo by a doctor?

* 7. Does the vitiligo affect both sides of the body?

* 8. How much body surface area does the vitiligo affect?

* 9. What is your weight (please indicate if pounds or kilograms)?

* 10. What is your current height (please indicate if inches or centimeters)?

* 11. Where were you born (please enter city, state and country)?

* 12. Where do you currently live (please enter city, state and country)?

* 13. Where did you grow up for the first ten years of your life? (Please indicate city, state and country)

* 14. How often did you go to the beach as a child?

* 15. Did you ever have a blistering sunburn?

* 16. If you answered "yes", that you had a previous sunburn, please explain when this occurred?

* 17. For women: Have you ever breastfed?

* 18. If you have breastfed- How long did you breastfeed? Please answer in years and months

* 19. What dates did you breastfeed (month/ year of start - month/ year of completion)?

* 20. How long did/do you have vitiligo?

* 21. How old were you when your vitiligo started (age in years)?

* 22. When did your vitiligo start (SPECIFY SEASON)?

* 23. On which parts of the body is your vitiligo located (PLEASE INDICATE USING A YES OR NO RESPONSE)?

Grey Hair
In the Mouth

* 24. On what part of your body did you first notice your vitiligo?

* 25. Have you ever used tooth bleaching products? If so, when?

* 26. Do you now or have you used hair bleaches?

* 27. Please include the years you used hair dye.

* 28. Which of the vitiligo locations is most bothersome to you?

* 29. Why is the area you specified above the most bothersome?

* 30. Which location of vitiligo lesions gets the most comments from the public (answer none if the areas are covered by clothing)?

* 31. Do you have vitiligo on your genital area?

* 32. Has genital vitiligo affected your sexual relationships?

* 33. How many doctors in total, including primary care physicians, have you seen for vitiligo?

* 34. Did your primary care doctor offer you a prescription or advice to treat your vitiligo?

* 35. If you answered yes to the above, which medication or what advice was prescribed?

* 36. Has any doctor ever told you there is no therapy for vitiligo?

* 37. If you answered yes to questions 35, how many doctors have told you there was no therapy?

  Pediatrician Internist Dermatologist Other Doctor

* 38. If you answered yes to question 35, how recent was the last physician interaction where the doctor said there was no therapy ?

* 39. Do you have or have you ever had (circle those that apply) asthma, allergies or eczema?

  Yes No
Eczema or Atopic Dermatitis
Food Allergies
Seasonal Allergies

* 40. Do you have or have you ever had intermittent abdominal cramping ?

* 41. If you answered yes to question 38, when did you have the cramping?

* 42. Are you lactose intolerant?

* 43. How many dairy servings do you eat each day (e.g. glass of milk, cheese slice, yogurt cup, half-cup of cottage cheese)?

* 44. Please answer YES if you have had one of these infectious diseases

  Yes No
Infectious Mononucleosis
Chicken Pox
Infectious Hepatitis

* 45. If you answered yes to question 42, please specify how old you were when you had each infection (years)?

* 46. Did you have acne at any point in your life (check all answers that apply)?

* 47. How severe was your acne?

* 48. Were you ever diagnosed with cystic acne?

* 49. Please indicate if you've taken one of these medical therapies

  Yes No
Accutane (Isotretinoin)
Allergy Shots

* 50. If you answered yes to ACCUTANE in question 48, please indicate:

* 51. If you answered yes to ALLERGY SHOTS in question 48, please indicate:

* 52. Do you have any other autoimmune diseases other than vitiligo?

* 53. If you answered yes above, please indicate which of these illnesses you had or write in under other

  Yes No
Thyroid (Autoimmune)
Diabetes (Type 1)
Diabetes (Type 2)
Rheumatoid Arthritis
Pernicious Anemia
Addison's Disease
Alopecia Areata
Ulcerative colitis
Crohn's disease
Celiac disease
Dermatitis herpetiformis
Multiple sclerosis
Lichen sclerosus
Sjogren's disease
Chronic urticaria (hives)

* 54. If you answered yes to any of the autoimmune disorders in question 51, please indicate how old you were when you first developed symptoms or leave blank if you don't have them (age in years)

* 55. Have you tried the following treatments? If you answer yes, please indicate when you took the therapy (year), for how long you used therapy?, if you got color? How much color and where you got color? PLEASE COMPLETE to the best of your ability

* 56. Which treatment did you find most effective?

* 57. Did you have any stressful life events in the 2 years prior to the onset of vitiligo (e.g. divorce, lost job, etc.)?

* 58. If yes, what had occurred?

* 59. Does your vitiligo get worse or spread after stressful events occur?

* 60. Do you have friends with vitiligo (circle one)?

* 61. If you answered yes to 59, when did you first become friends?

* 62. Had a loved one passed away within the 2 years prior to developing vitiligo?

* 63. If you answered yes to question 61, please specify who passed away?

* 64. You will now be asked questions regarding your feelings about vitiligo. Do you wish to participate?