Fill out the top form to identify the Diabetes. qNo. qYes. Age of onset: insulin dependent diabetes mellitus (Type II, adult onset) qUnknown; q Other: …
A COPY OF THIS PAGE MUST ACCOMPANY SPECIMENS
CONTROL ONLY LONG FORM
Fill out the top form to identify the patients blood specimen This top
form accompanies the Long Form Questionnaire
Short Form ID ________Long Form ID__________MR______Date: ____/___/_____
Site: CO MN NY SF TX PRIVATE-Name:_____________ MM DD
YYYY
Name: _____________________________ Gender: M F Date of
Birth:_____________
Last First
MI
MM DD YYYY
|Group |AA Type |Not Affected |
|Control |Non AA | Family w/o AA |
| | | Spouse of AA patients |
| | | Others _________________|
Biological Fathers Last Name:______________________________
Biological Mothers Maiden Name:___________________________
CONTROL ONLY LONG FORM
Please cut this bottom form: Ship it with the DATED blood tubes
and label the
tubes with the patients name and Short Form ID
Short Form ID ________Long Form ID__________MR______Date:
____/___/_____
Site: CO MN NY SF TX PRIVATE-Name:_____________ MM DD
YYYY
Name: _____________________________ Gender: M F Date of
Birth:_____________
Last First
MI
MM DD YYYY
|Group |AA Type |Not Affected |
|Control |Non AA | Family w/o AA |
| | | Spouse of AA patients |
| | | Others _________________|
Biological Fathers Last Name:______________________________
Biological Mothers Maiden Name:___________________________
National Alopecia Areata Registry Patient Data
Control
Part I : Patient Section
I have read the description of the study and have decided to participate
in the research project described I understand that I may refuse to
answer any or all of the questions at this or any other time I also
understand that there is a possibility that I may be contacted in the
future about this study, but I am free to refuse any further
participation if I wish
The goal of the study is to determine the susceptibility genes in a
disease called Alopecia Areata AA AA is considered an autoimmune
disease, in which the immune system mistakenly attacks the hair
follicles Alopecia areata is characterized as a patchy hair loss AA,
or complete scalp hair loss with or without some body hair loss Alopecia
Totalis, AT or complete entire scalp and body hair loss Alopecia
Universalis, AU In order to be able to find the susceptibility genes we
need biological specimens from normal unaffected controls Individuals
who are participating as a control should have no blood relation with
anyone who has AA as described above
Please fill in all the blanks or check the appropriate boxes:
Date: ______ /_______/______
A Contact Personal Information
1 Last Name Registrant:
_____________________________________________________
First Name: _________________________Middle:________________
Maiden:___________
2 Current Address: ___
Street City State Zip
Country
Telephone
Number:
Day________________________Evening______________________
FAX: ________________________Email:
________________________________________
3 Sex: Male Female
4 Date of Birth: MM/DD/YY —–/—–/—–
5 Are you adopted? No Yes
6What is your Current Marital status? Check one
Never married Widowed Separated Divorced Married Number of
times___
7 Have you EVER had at ANY TIME in your life patches of baldness
ALOPECIA AREATA; AA, or total scalp hair loss ALOPECIA TOTALIS;AT, or
total scalp and entire body hair loss ALOPECIA UNIVERSALIS; AU? No
continue the next question Yes
8 Do you have any blood relatives with AA, AT, or AU as explained above?
No Yes
AA/AT/AU Other type of hair loss
Age of onset
if known
Biological mother ———————– ————–
——————
Parents of mother ———————– ————–
——————
Aunts-Uncles mother side ———————– ————–
——————
Cousins mother side ———————– ————–
——————
Biological father
———————– ————–
——————
Parents of father ———————– ————–
——————
Aunts-Uncles father side ———————– ————–
——————
Cousins father side ———————- ————–
——————
Sisters ———————– ————– –
—————-
Brothers ———————– ————– –
—————-
Daughters ———————– ————– –
—————-
Sons ———————– ————–
——————
Grand children ———————– ————–
——————
9 Are you willing to have blood drawn for research as a control? No
Yes
B Ethnic/Racial Background
10 Where were you born?
_______________________________________________________ or Dont Know
city state country
11 Where was your mother born?
_________________________________________________________ or Dont
Know
city state country
12 Where was your father born?
____________________________________________________ or Dont Know
city state country
13 Maternal grandmother?
___________________________________________________ or Dont
Know
city state country
14 Maternal grandfather?
___________________________________________________ or Dont
Know
city state country
15 Paternal grandmother?
_________________________________________________________ or Dont
Know
city state country
16 Paternal grandfather?
____________________________________________________ or Dont
Know
city state country
Please look at the ethnic group categories below and choose the best one or
two ancestries for your closest blood relatives to fill squares in with the
letters that match the ancestries
|Biological|Maternal |Maternal |Biological|Paternal |Paternal |
| |Grandmother|Grandfathe| |Grandmother|Grandfathe|
|Mother | |r |Father | |r
|
| | | | |
|ALLERGIES | | | |
|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: ______________________________ |
|Urticaria hives or |No |Yes |Time period: From_______Year To_______Year |
|angioedema | | |Allergy Shots |
|Other allergies | | |Type:_________________________________ |
|Allergy shots | | | |
|ARTHRITIS | | | |
|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|
|arthritis | | |of onset: _______ |
|COLLAGEN VASCULAR DIS | | | |
|Antiphospholipid | | | |
|syndrome |No |Yes |Age of onset: ________ |
|Anticardiolipin |No |Yes |Age of onset:_________ |
|syndrome |No |Yes |Age of onset: ________ |
|Fibromyalgia-fibromyosi|No |Yes |Age of onset: ________ |
|tis |No |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 | | | |
|DIS | | | |
|Bullous pemphigoid |No |Yes |Age of onset: ________ |
|Cicatrical pemphigoid |No |Yes |Age of onset: ________ |
|Dermatitis |No |Yes |Age of onset: ________ Type: |
|herpetiformis |No |Yes |______________________________ |
|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 |
|Down Syndrome |No |Yes |Age of onset: ________ |
|Idiopathic thrombocytopenic purpura | |
|ITP |No |Yes |Age of onset: ________ |
|Immunodeficiency |No |Yes |Age of onset: ________ |
|syndrome |
| | |
|Inflammatory bowel |No |Yes |Age of onset: _______ |
|disease | | |Type : Crohns disease, Ulcerative colitis, |
| | | |Irritable bowel syndrome |
|Clinical Depression |No |Yes |Age of onset: _____ |
|Bipolar Disease |No |Yes |Medication/Treatment:__________________________ |
| | | |Age of onset: _____ |
| | | |Medication/Treatment:___________________________|
| | | |_______ |
|ADHD |No |Yes |Age of onset: _____ |
| | | |Medication/Treatment:__________________________ |
|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 | | | |
|Chronic inflammatory | | | |
|demyelinating |No |Yes |Age of onset: ________ |
|polyneuropathy |No |Yes |Age of onset: ________ |
|Guillain-Barré syndrome |No |Yes |Age of onset: ________ |
|Multiple sclerosis |No |Yes |Age of onset: ________ |
|Myasthenia gravis | | | |
|Pernicious anemia |No |Yes |Age of onset: ________ |
|Piebaldism |No |Yes |Congenital: Date of birth:_________ |
|Polychondritis |No |Yes |Age of onset: ________ |
|Primary biliary |No |Yes |Age of onset: ________
|
|cirrhosis | | | |
|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 |1 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 | | | |
|Churg-Strass syndrome |No |Yes |Age of onset: ________ |
|Allergic | | | |
|granulomatosis |No |Yes |Age of onset: ________ |
|Cold agglutinin disease| | | |
|Essential mixed |No |Yes |Age of onset: ________ |
|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 | | |
|
|Giant cell arteritis | | | |
|Vitiligowhite skin |No |Yes |Age of onset: ________ |
|spots | | | |
|Waardenburg syndrome |No |Yes |Congenital: no date of onset |
25 Do any of your relatives have any of the above disease? No Yes-
—-Please list:
1 the diseases, 2 the relationships of these people to you, and 3
whether they are on your mothers side or fathers side of the family:
Type of diseases Age of onset
Alive/Dead
Biological mother ————————- ————–
- /
Parents of mother ————————- ————–
- /
please indicate mother or father
Aunts mother side ———————— ————–
- /
Uncles mother side ———————— ————–
- /
Cousins mother side ————————-
————–
- /
Biological father ————————- ————–
- /
Parents of father ————————- ————–
- /
please indicate mother or father
Aunts father side ————————- ————–
- /
Uncles father side ————————– ————–
- /
Cousins father side ————————- ————–
- /
Sisters ———————— —————
/
Brothers ————————— —————
/
Daughters ————————— —————
/
Sons ————————– ————–
- /
Grand children ————————– ————–
- /
26 Do you have any conditions youve been diagnosed with? eg: Infection
diseases, Cancer, Genetic diseases, Please
explain
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________27 Please list all current medications you take FOR
ANY DISORDER and explain why List their dosages Include over the counter
medications and vitamins or herbs and special diets
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
_________________________
Physician: Please review Part I with patient before you continue with Part
II
Part II: Physician Section
Site of Long form Registration: MN SF CO TX NY Other——————
——
Date of interview: —–/—–/—– Name of
interviewer:
___________________
MM/DD/YYYY
1 Height? —-ft—-in/- —m—–cm 2 Weight? ——–
lb/——-kg
3 Please Circle any other skin conditions on exam:
Alopecia Areata
Androgenic Alopecia
Cicatricial Alopecia
Fingernails or toenails: pitting, dystrophy, onycholysis,
onychomycosis
Acne or Acne rosacea
Atopic dematitis or eczema nummular
Bacterial skin infection, impetigo, boils,
Other___________________________
Benign skin growth: Seborrheic keratoses, skin tags,
Other_________________
Candidiasis Mouth, nails, intertrigo
Dysplastic moles
Freckles or Photodamaged skin or Actinic keratoses
Icthyosis vulgaris
Inflammatory skin disorder: Lichen planus, Lupus, Other
_________________
Necrobiosis lipoidica diabeticorum, Diabetic dermopathy
Psoriasis
Pretibial myxedema
Scleroderma
Seborrhea / dandruff
Nail bed telangiectasias, Raynauds phenomenon
Tinea pedis, capitus, corporis, unguum
Warts or molluscum or other viral ___________________________
Vitiligo, Idiopathic
guttate hypomelanosis
Other:________________________________________________
None
OFFICIAL USE ONLY
Long Form Questionnaire: Received: MM / DD / YYYY
Person who reviewed Long For- Questionnaire at Central Site:
_________________________________________
Long Form Questionnaire: Entered: MM / DD / YYYY
Person Who Entered Long Form Questionnaire into Database:
__________________________________________
