diseases — diseases such as heart disease, diabetes and even some cancers. congestive heart failure, and diabetes mellitus, and other conditions that …
This questionnaire is only for people who live in the USA and who have
personal or family documentation of Alopecia Areata or Alopecia Totalis or
Alopecia Universalis by a Dermatologist
ALOPECIA AREATA Registry and Family Study
I have read the description of the study, and I have decided to participate
in the research project described here I understand that I may refuse to
answer any or all of the questions at this or any other time I
understand that there is a possibility that I might be contacted in the
future about this, but that I am free to refuse any further participation
if I wish
Please fill in all the blanks or check the appropriate boxes, the starred
fields are optional:
Last Name Registrant: __________________________________________ Date:
MM / DD / YYYY
First Name: ________________________________Middle______________ Maiden
Primary Contact Address:
Secondary Contact Address:
Telephone Number: Home_________________________Work
FAX: ______________________Email: ____________________
Did a dermatologist diagnose your alopecia areata? No Yes
If yes, Your Dermatologists
Name___________________________________Phone
Last
First
Middle
Your Dermatologists Address
Biological Mothers
Name:______________________________________________________________
Last
First
Maiden
Is she alive? No/Unknown Yes Phone
Biological Fathers Name:
______________________________________________________________
Last
First
Middle
Is he alive? No/Unknown Yes Phone
I am filling this form out for Myself My child Other:
_________________________________
My spouse, my friend, my
patient, etc
If you are filling this out for someone else, please give your
name:_________________________________
Last First
Middle
If someone in your family with AA has already
registered, please give the
name and contact information,
so that we can link that person to this questionnaires Registrant Please
list the relationship of todays Registrant to that family AA person and
indicate whether it is on the mothers side or fathers side
Name:_
__________________Relationship:_____________________
Last
First Middle
Telephone Number: Primary_______________Secondary________________FAX:
_______________
Primary Contact Address:
_
The following information is required unless starred to participate in
the Registry:
1 Sex: Male Female 2 Date of Birth: MM
/ DD / YYYY
3 Are you adopted? No Yes
4 What is your current marital status? Check one
Never married Widowed Separated Divorced Married
Number of times __________
|5 Race: American Indian or Alaska Native Asian Black or African American |
|Hispanic or Latino |
| Native Hawaiian/Other Pacific Islander White Mixed Race:______________ |
|Other: _______
|
|6 My natural hair color is: Red Blonde Brown Auburn Black Gray |
|White Other: _________ |
|Are you a Twin? No or Yes: Fraternal Identical Unknown type Triplets |
|or more |
|Have you ever had at any time in your life Alopecia Areata AA, Totalis AT or |
|Universalis AU? No go to question 17 Yes -continue |
| |
|9 Age of first onset of AA/AT/AU: __________ Under 6 months of age at onset? |
|No or Yes |
|10 Did you ever have a biopsy of your scalp? No Yes |
|11 The greatest amount of hair loss ever experienced on your scalp is |
| None Up to 25 26-50 51-75 76-99 100 completely bald |
|12 Did this episode last for 6 months 6 months 1-2 years 2 years ? |
|13 Have you lost body hair? No or Yes Some hair, All hair |
|14 Are
nails involved? No or Yes Some nails All nails |
|15 How many episodes of AA/AT/AU have you had? |
| Only 1Including Continuous 2-5 6-10 10 Too many to count Dont|
|know |
|16 Was there an environmental trigger, an event/exposure, or an infection within 6 |
|months of the first episode? |
| No or Yes, |
|explain:____________________________________________________________________ |
| Do you have seasonal flares of AA? No Yes Spring Summer Fall |
|Winter |
|17 Has anyone in your family, not including yourself, ever had AA/AT or AU? No, |
|go to question 19 |
|Or Yes Are they related by marriage No Yes Spouse Stepchild |
|Other______________ |
|Are
they related by blood? No or Yes Number of living blood relatives with AA in|
|family NOT INCLUDING YOU is: ____ Number of living brothers with AA is ____ Number|
|of living sisters with AA is: ____ If you have other living blood relatives with AA, |
|check any that apply |
| Mother Parents of mother Unclesmothers side Auntsmothers side |
|Cousinsmothers side |
| Father Parents of father Unclesfathers side Auntsfathers side |
|Cousinsfathers side |
| Identical twin Fraternal twin Son Daughter Grandson Granddaughter |
|Multiple children |
| Other please indicate mothers side versus fathers side of the family: |
|____________________________________ |
| |
|Number of dead blood relatives with AA in family is: ____ If you have dead blood |
|relatives with AA,
list the relationships of these people to you mothers versus |
|fathers side of the family: ______________________________ |
| |
|18 If your brothers or sisters have AA/AT/AU, what kinds of alopecia do they |
|have? AA AT AU |
|Do you have living family members with AA/AT/AU that are not your brothers or |
|sisters? No Yes |
|19 Are you interested in future experimental treatment or research studies, and do |
|you wish to be contacted by Registry personnel? No Yes |
|20 Are you willing to have blood drawn for research? No Yes |
|21 Are you willing to travel to any of the following sites? No or Yes Check |
|all that apply |
|Houston New York Denver Minneapolis San Francisco |
|Other:_______________________ |
22 Have
you had blood drawn for HLA in past? No or Yes
23 Have you participated in any alopecia research study in the past? No
or Yes
24 Do you have any allergic, rheumatic, collagen vascular, or autoimmune
diseases?
No go to end of last page Yes Please check all that apply:
|Addisons disease |No |Yes |Age of onset: ________ |
|ALLERGIES |No |Yes | |
|Asthma |No |Yes |Age of onset: ________ |
|Atopic dermatitis or |No |Yes |Age of onset: ________ |
|eczema |No |Yes |Age of onset: ________ |
|Hay fever/allergic |No |Yes |Age of onset: ________ |
|rhinitis |No |Yes |Specify Type and age of onset: |
|Urticaria hives or |No |Yes |________________________________ |
|angioedema | | |Time period: From_______Year To_______Year|
|Other allergies | | | |
|Allergy shots | | |Allergy Shots
|
| | | |For:_________________________________________ |
|ARTHRITIS |No |Yes | |
|Ankylosing spondylitis |No |Yes |Age of onset: _______ |
|Spondyloarthritis |No |Yes |Age of onset: _______ |
|Juvenile arthritis |No |Yes |Age of onset: _______ |
|Reiters syndrome |No |Yes |Age of onset: _______ |
|Rheumatoid arthritis |No |Yes |Age of onset: _______ |
|Other forms of |No |Yes |Specify Type: ________________________ Age of |
|arthritis | | |onset: ________ |
|COLLAGEN VASCULAR DIS |No |Yes | |
|Antiphospholipid |No |Yes |Age of onset: ________ |
|syndrome | | | |
|Anticardiolipin |No |Yes |Age of onset: ________ |
|syndrome |No |Yes |Age of onset: ________
|
|Fibromyalgia-fibromyosi|NoN|Yes |Age of onset: ________ |
|tis |o |Yes |Age of onset: ________ |
|Polymyositis/dermatomyo|No |Yes |Age of onset: ________ |
|sitis |No |Yes |Age of onset: ________ |
|Raynauds syndrome | | | |
|CREST syndrome |No |Yes |Age of onset: ________ |
|Scleroderma | | | |
|Sjogrens syndrome | | | |
|Systemic lupus | | | |
|erythematosus | | | |
|Lupus, SLE | | | |
|Autoimmune | | | |
|polyendocrinopathy- | No |Yes |Age of onset: ________ |
|candidosis-ectodermal | | | |
|dystrophy
| | | |
|APS1 autoimmune polyendocrine | |
|syndrome type1 | |
|Autoimmune hemolytic | No |Yes |Age of onset: ________ |
|anemia | | | |
|Autoimmune hepatitis | No |Yes |Age of onset: ________ |
|non-infectious chronic| | | |
|active hepatitis | | | |
|Behcets disease | No |Yes |Age of onset: ________ |
|AUTOIMMUNE BLISTERING | No |Yes | |
|DIS | | | |
|Bullous pemphigoid | No |Yes |Age of onset: ________ |
|Cicatrical pemphigoid | No |Yes |Age of onset: ________ |
|Dermatitis | No |Yes |Age of onset: ________ |
|herpetiformis | No
|Yes |Type:______________________________ |
|Pemphigus vulgaris | | |Age of onset: ________ |
| | | |Type:______________________________ |
|Cardiomyopathy | No |Yes |Age of onset: ________ |
|Celiac disease/sprue | No |Yes |Age of onset: ________ |
|Diabetes | No |Yes |Age of onset: _______ |
| | | |Type of diabetes : Insulin dependent |
| | | |diabetes mellitus Type I, juvenile diabetes;|
| | | | Non-insulin dependent diabetes mellitus |
| | | |Type II, adult onset Unknown; |
| | | |Other:___________________________ |
| | | |Type of Treatment: all that apply Pills |
| | | |Diet Insulin No treatment |
|Idiopathic thrombocytopenic purpura | |
|ITP | No |Yes |Age of onset:
________ |
|Inflammatory bowel | No |Yes |Age of onset: _______ |
|disease | | |Type: Crohns disease, Ulcerative colitis, |
| | | |Irritable bowel syndrome |
|Hypoparathyroidism | No |Yes |Age of onset: ________ |
|Hyperparathyroidism | No |Yes |Age of onset: ________ |
|Kidney disease | No |Yes |Age of onset: _______ |
| | | |Type of Kidney disease: IgA |
| | | |nephropathy, Glomerulonephritis, |
| | | |Nephrosis, Nephrotic syndrome; Other |
| | | |____________________ |
|Lichen planus | No |Yes |Age of onset: ________ |
|NEUROLOGICAL DISEASE | No|Yes | |
|Chronic inflammatory | | | |
|demyelinating | |Yes |Age of onset: ________
|
|polyneuropathy | No|Yes |Age of onset: ________ |
|Guillain-Barré syndrome | |Yes |Age of onset: ________ |
|Multiple sclerosis | No|Yes |Age of onset: ________ |
|Myasthenia gravis | | | |
| | No| | |
| | | | |
| | No| | |
|Pernicious anemia | No |Yes |Age of onset: ________ |
|Polychondritis | No |Yes |Age of onset: ________ |
|Primary biliary cirrhosis| No |Yes |Age of onset: ________ |
|Psoriasis | No |Yes |Age of onset: ________ |
|Rheumatic fever | No |Yes |Age of onset: ________ |
|Sarcoidosis | No |Yes |Age of onset: ________ |
|Schmidt syndrome | No |Yes |Age of onset: ________
|
|APS2 autoimmune polyendocrine | |
|syndrome type2 | |
|Stiff-man syndrome | No |Yes |Age of onset: ________ |
|Moersch-Woltmann syndrome | |
|Thyroid disease | No |Yes |Age of onset: ______ Do you take thyroid |
| | | |replacement ? |
| | | |No Yes |
| | | |2 Type of thyroid disease: Graves |
| | | |disease; Myxedema; |
| | | | Hyperthyroidism; Hashimotos thyroiditis;|
| | | | Goiter; |
| | | | Hypothyroidism; |
| | | |Other_______________________ |
|Uveitis | No |Yes |Age of onset:
________ |
|VASCULITIS | No |Yes | |
|Churg-Strass syndrome | No |Yes |Age of onset: ________ |
|Allergic granulomatosis| | | |
| | No |Yes |Age of onset: ________ |
|Cold agglutinin disease | | | |
|Essential mixed cryoglobulinemia | |
| | No |Yes |Age of onset: ________ |
|Polyarteritis nodosa | No |Yes |Age of onset: ________ |
|Polymyalgia rheumatica | No |Yes |Age of onset: ________ |
|Takayasu arteritis | No |Yes |Age of onset: ________ |
|Temporal arteritis | No |Yes |Age of onset: ________ |
|Giant cell arteritis | | | |
|Vitiligo | No |Yes |Age of onset: ________ Extent of Vitiligo |
| | |
|_______________________ |
|Waardenburg syndrome | No |Yes |Congenital: no date of onset |
25 Do any of your relatives have any of the above diseases? No or
Yes Please list the diseases and the relationships of these people to
you Please indicate mothers side versus fathers side of the family:
____________________________________________________________________________
____________________________________________________________________________
____
Thank you for participating in the initial questionnaire for the Alopecia
Areata Registry We will contact you again after we review your
information You may withdraw from the Registry at any time You can
contact us and mail, fax, or email your forms and questions at:
Alopecia Areata Registry M D Anderson Cancer Center Department
of Dermatology Box 434
1515 Holcombe Blvd Houston, Texas 77030 Tel: 713-792-5999 Fax: 713-
794-1491
E-Mail: alopeciaregistry@mdandersonorg Website:
http://wwwalopeciaareataregistryorg
OFFICIAL USE
ONLY
Registrant: Short Form ID: ________________ Long Form ID
Biological Mothers Short Form ID: ______________; Biological
Fathers Short Form ID:
Proband: Yes No Proband Short Form ID: ____________ Proband Long
Form ID
Contact physician: MN SF CO TX NY
Other:____________________________________________
Central Site Review: MM / DD / YYYY
Accept Reject Hold
Source:dfwahec.org
