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Protocol - Personal and Family History of Autoimmune and Inflammatory Disorders

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Description

This protocol includes self-administered questions from the Lupus Family Registry and Repository (LFRR). Respondents answer questions regarding their personal history and family history of various autoimmune and inflammatory disorders.

Specific Instructions

The Infectious Diseases and Immunity Working Group notes that this instrument captures numerous symptoms and signs that are not highly characteristic of or peculiar to autoimmunity. In addition, certain conditions considered autoimmune may not be included, such as celiac disease and multiple sclerosis.

Availability

Available

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Protocol

For each of the following conditions, indicate whether you have ever had the condition or if a doctor has told you that you have the condition. Mark only one response for each. If the condition is still present, mark P (Present). If it has been a problem but is no longer a problem, mark Y (Yes). Otherwise, mark N (Never).

Condition

P

Y

N

Prominent rash on cheeks for more than 1 month

[ ] [ ] [ ]

Skin breaks out in the sun (not sunburn)

 [ ] [ ] [ ]

Sores in mouth for more than 2 weeks

 [ ] [ ] [ ]

Arthritis or rheumatism for more than 3 months

 [ ] [ ] [ ]

Pain for more than a few days when taking deep breath (pleurisy)

 [ ] [ ] [ ]

Protein in urine

 [ ] [ ] [ ]

Low blood counts (anemia, low white blood cell count, or low platelet count)

 [ ] [ ] [ ]
If yes or still present Anemia

Hemolytic anemia

Low white blood cell count

Low platelet count

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

Idiopathic thrombocytopenia purpura (ITP)

 [ ] [ ] [ ]

Bruise easily

 [ ] [ ] [ ]

Positive skin test for tuberculosis (tuberculin, PPD, or TINE test)

 [ ] [ ] [ ]

Positive blood test for syphilis (VDRL or RPR)

 [ ] [ ] [ ]

Seizure, convulsion, or fit

 [ ] [ ] [ ]

Mental illness (requiring hospital admission) or psychosis or hallucinations

 [ ] [ ] [ ]

Rapid hair loss NOT due to chemotherapy

 [ ] [ ] [ ]

Mononucleosis (mono)

 [ ] [ ] [ ]

If yes or still present, age you first had mono

0-12[ ][ ] 13-19 [ ] 20+

Condition

P

Y

N

Chronic fatigue

 [ ] [ ] [ ]

Psoriasis

 [ ] [ ] [ ]

Scleroderma

 [ ] [ ] [ ]

Vitiligo

 [ ] [ ] [ ]

Fever blisters on lips

 [ ] [ ] [ ]

Poison ivy

 [ ] [ ] [ ]

Athletes foot

 [ ] [ ] [ ]

Fibromyalgia

 [ ] [ ] [ ]

Arthritis

 [ ] [ ] [ ]

Osteoarthritis

 [ ] [ ] [ ]

Bunions

 [ ] [ ] [ ]

Myasthenia gravis

 [ ] [ ] [ ]

Slow heart beat (less than 50 beats per minute)

 [ ] [ ] [ ]

Recurrent chest pain

 [ ] [ ] [ ]

Heart attack

 [ ] [ ] [ ]

Asthma

 [ ] [ ] [ ]

Recurrent heart burn

 [ ] [ ] [ ]

Ulcer (stomach or duodenal)

 [ ] [ ] [ ]

Recurrent diarrhea

 [ ] [ ] [ ]

Hemorrhoids (piles)

 [ ] [ ] [ ]

Jaundice

 [ ] [ ] [ ]

Appendicitis

 [ ] [ ] [ ]

Cancer

 [ ] [ ] [ ]

Kidney stones

 [ ] [ ] [ ]

Recurrent urinary tract infections

 [ ] [ ] [ ]

Condition

P

Y

N

Recurrent vaginitis

 [ ] [ ] [ ]

Depression

 [ ] [ ] [ ]

Chronic headaches

 [ ] [ ] [ ]

Anxiety or panic disorder

 [ ] [ ] [ ]

Carpal tunnel syndrome

 [ ] [ ] [ ]

Anemia

 [ ] [ ] [ ]

Pernicious anemia

 [ ] [ ] [ ]

Diabetes

 [ ] [ ] [ ]

Thyroid problems

 [ ] [ ] [ ]

Infertility

 [ ] [ ] [ ]

Multiple miscarriages

 [ ] [ ] [ ]

High blood pressure

 [ ] [ ] [ ]

Phlebitis

 [ ] [ ] [ ]

Pulmonary embolus

 [ ] [ ] [ ]

Stroke

 [ ] [ ] [ ]

Blood clot

 [ ] [ ] [ ]

Sjögrens syndrome

 [ ] [ ] [ ]

Dry eyes

 [ ] [ ] [ ]

Dry mouth

 [ ] [ ] [ ]

False teeth

 [ ] [ ] [ ]

Seasonal allergies (or hay fever)

 [ ] [ ] [ ]

Sinus problems

 [ ] [ ] [ ]

Graying of all or nearly all hair before 35

 [ ] [ ] [ ]

Baldness

 [ ] [ ] [ ]

Varicose veins

 [ ] [ ] [ ]

Breast implants

 [ ] [ ] [ ]

Spleen removed

 [ ] [ ] [ ]

List your familys history of the following diseases. For example, the first row would indicate that you have a history of rheumatoid arthritis. The second row would indicate that Jane Doe, your grandmother on your fathers side, has a history of type 2 diabetes. Use the back of this page if you need more space.

Diseases

1

Systemic lupus erythematosus (SLE)

2

Rheumatoid arthritis

3

Sjögrens syndrome

4

Discoid lupus

5

Autoimmune thyroid disease (AITD)

6

Type 1 diabetes (Juvenile onset)

7

Type 2 diabetes (Adult onset)

8

Myasthenia gravis

9

Scleroderma

10

Addisons disease

11

Idiopathic thrombocytopenia (ITP)

12

Antiphospholipid syndrome

13

Graying of all hair before age 35

14

Other autoimmune disorder

Relationships

1

Self

2

Full sibling

3

Half sibling

4

Child

5

Grandchild

Mothers Side

Fathers Side

6

Mother

7

Mother

8

Aunt

9

Aunt

10

Uncle

11

Uncle

12

Cousin

13

Cousin

14

Grandmother

15

Grandmother

16

Grandfather

17

Grandfather

18

Other

19

Other

Disease

Relationship

Name of Relative (if not self)

2

1

7

15

JANE DOE

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Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adult

Participants

Adults, aged 18 years and older

Selection Rationale

This protocol is a widely used and validated instrument for eliciting the history and manifestations of autoimmune disorders.

Language

English, Other languages available at source

Standards
StandardNameIDSource
Logical Observation Identifiers Names and Codes (LOINC) Pers fam hx autoimm inflamm proto 62892-5 LOINC
Human Phenotype Ontology Autoimmunity HP:0002960 HPO
caDSR Form PhenX PX161401 - Personal And Family History Of Autoimmune And Inflammato 6258417 caDSR Form
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Lupus Family Registry and Repository (LFRR) Questionnaire, 2007

Source

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). (2007). Lupus Family Registry and Repository (LFRR) Questionnaire—SLE. Pages 9–11.

General References

none

Protocol ID

161401

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX161401_Age_First_Had_Mononucleosis
PX161401160100 If yes or still present, age you first had mono N/A
PX161401_Anemia
PX161401470000 Anemia Variable Mapping
PX161401_Anxiety
PX161401450000 Anxiety or panic disorder Variable Mapping
PX161401_Appendicitis
PX161401380000 Appendicitis N/A
PX161401_Arthritis
PX161401250000 Arthritis Variable Mapping
PX161401_Arthritis_More_Than_3_Months
PX161401040000 Arthritis or rheumatism for more than 3 months N/A
PX161401_Asthma
PX161401320000 Asthma Variable Mapping
PX161401_Athletes_Foot
PX161401230000 Athlete's foot N/A
PX161401_Baldness
PX161401650000 Baldness N/A
PX161401_Blood_Clot
PX161401570000 Blood clot Variable Mapping
PX161401_Breast_Implants
PX161401670000 Breast implants N/A
PX161401_Bruise
PX161401100000 Bruise easily N/A
PX161401_Bunions
PX161401270000 Bunions N/A
PX161401_Cancer
PX161401390000 Cancer Variable Mapping
PX161401_Carpal_Tunnel_Syndrome
PX161401460000 Carpal tunnel syndrome N/A
PX161401_Chronic_Fatigue
PX161401170000 Chronic fatigue Variable Mapping
PX161401_Chronic_Headaches
PX161401440000 Chronic headaches N/A
PX161401_Depression
PX161401430000 Depression Variable Mapping
PX161401_Diabetes
PX161401490000 Diabetes Variable Mapping
PX161401_Dry_Eyes
PX161401590000 Dry eyes Variable Mapping
PX161401_Dry_Mouth
PX161401600000 Dry mouth Variable Mapping
PX161401_False_Teeth
PX161401610000 False teeth Variable Mapping
PX161401_Family_History_10_Disease
PX161401780100 Family History 10 - Disease N/A
PX161401_Family_History_10_Name
PX161401780300 Name of Relative (if not self) N/A
PX161401_Family_History_10_Relationships
PX161401780200 Family History 10- Relationships N/A
PX161401_Family_History_11_Disease
PX161401790100 Family History 11 - Disease N/A
PX161401_Family_History_11_Name
PX161401790300 Name of Relative (if not self) N/A
PX161401_Family_History_11_Relationships
PX161401790200 Family History 11- Relationships N/A
PX161401_Family_History_12_Disease
PX161401800100 Family History 12 - Disease N/A
PX161401_Family_History_12_Name
PX161401800300 Name of Relative (if not self) N/A
PX161401_Family_History_12_Relationships
PX161401800200 Family History 12- Relationships N/A
PX161401_Family_History_13_Disease
PX161401810100 Family History 13 - Disease N/A
PX161401_Family_History_13_Name
PX161401810300 Name of Relative (if not self) N/A
PX161401_Family_History_13_Relationships
PX161401810200 Family History 13- Relationships N/A
PX161401_Family_History_14_Disease
PX161401820100 Family History 14 - Disease N/A
PX161401_Family_History_14_Name
PX161401820300 Name of Relative (if not self) N/A
PX161401_Family_History_14_Relationships
PX161401820200 Family History 14- Relationships N/A
PX161401_Family_History_15_Disease
PX161401830100 Family History 15 - Disease N/A
PX161401_Family_History_15_Name
PX161401830300 Name of Relative (if not self) N/A
PX161401_Family_History_15_Relationships
PX161401830200 Family History 15- Relationships N/A
PX161401_Family_History_16_Disease
PX161401840100 Family History 16 - Disease N/A
PX161401_Family_History_16_Name
PX161401840300 Name of Relative (if not self) N/A
PX161401_Family_History_16_Relationships
PX161401840200 Family History 16- Relationships N/A
PX161401_Family_History_17_Disease
PX161401850100 Family History 17 - Disease N/A
PX161401_Family_History_17_Name
PX161401850300 Name of Relative (if not self) N/A
PX161401_Family_History_17_Relationships
PX161401850200 Family History 17- Relationships N/A
PX161401_Family_History_1_Disease
PX161401690100 Family History 1 - Disease Variable Mapping
PX161401_Family_History_1_Name
PX161401690300 Name of Relative (if not self) N/A
PX161401_Family_History_1_Relationships
PX161401690200 Family History 1 - Relationships N/A
PX161401_Family_History_2_Disease
PX161401700100 Family History 2 - Disease N/A
PX161401_Family_History_2_Name
PX161401700300 Name of Relative (if not self) N/A
PX161401_Family_History_2_Relationships
PX161401700200 Family History 2 - Relationships N/A
PX161401_Family_History_3_Disease
PX161401710100 Family History 3 - Disease N/A
PX161401_Family_History_3_Name
PX161401710300 Name of Relative (if not self) N/A
PX161401_Family_History_3_Relationships
PX161401710200 Family History 3- Relationships N/A
PX161401_Family_History_4_Disease
PX161401720100 Family History 4 - Disease N/A
PX161401_Family_History_4_Name
PX161401720300 Name of Relative (if not self) N/A
PX161401_Family_History_4_Relationships
PX161401720200 Family History 4- Relationships N/A
PX161401_Family_History_5_Disease
PX161401730100 Family History 5 - Disease N/A
PX161401_Family_History_5_Name
PX161401730300 Name of Relative (if not self) N/A
PX161401_Family_History_5_Relationships
PX161401730200 Family History 5- Relationships N/A
PX161401_Family_History_6_Disease
PX161401740100 Family History 6 - Disease N/A
PX161401_Family_History_6_Name
PX161401740300 Name of Relative (if not self) N/A
PX161401_Family_History_6_Relationships
PX161401740200 Family History 6- Relationships N/A
PX161401_Family_History_7_Disease
PX161401750100 Family History 7 - Disease N/A
PX161401_Family_History_7_Name
PX161401750300 Name of Relative (if not self) N/A
PX161401_Family_History_7_Relationships
PX161401750200 Family History 7- Relationships N/A
PX161401_Family_History_8_Disease
PX161401760100 Family History 8 - Disease N/A
PX161401_Family_History_8_Name
PX161401760300 Name of Relative (if not self) N/A
PX161401_Family_History_8_Relationships
PX161401760200 Family History 8- Relationships N/A
PX161401_Family_History_9_Disease
PX161401770100 Family History 9 - Disease N/A
PX161401_Family_History_9_Name
PX161401770300 Name of Relative (if not self) N/A
PX161401_Family_History_9_Relationships
PX161401770200 Family History 9- Relationships N/A
PX161401_Fever_Blisters_On_Lips
PX161401210000 Fever blisters on lips Variable Mapping
PX161401_Fibromyalgia
PX161401240000 Fibromyalgia Variable Mapping
PX161401_Graying_Hair_Before_35
PX161401640000 Graying of all or nearly all hair before 35 N/A
PX161401_Heart_Attack
PX161401310000 Heart attack Variable Mapping
PX161401_Hemorrhoids
PX161401360000 Hemorrhoids (piles) Variable Mapping
PX161401_High_Blood_Pressure
PX161401530000 High blood pressure Variable Mapping
PX161401_Idiopathic_Thrombocytopenia_Purpura
PX161401090000 Idiopathic thrombocytopenia purpura (ITP) N/A
PX161401_Infertility
PX161401510000 Infertility Variable Mapping
PX161401_Jaundice
PX161401370000 Jaundice Variable Mapping
PX161401_Kidney_Stones
PX161401400000 Kidney stones Variable Mapping
PX161401_LBC_Anemia
PX161401080100 If yes or still present Anemia Variable Mapping
PX161401_LBC_Hemolytic_Anemia
PX161401080200 If yes or still present Hemolytic anemia N/A
PX161401_Low_Blood_Counts
PX161401070000 Low blood counts (anemia, low white blood more
cell count, or low platelet count) show less
N/A
PX161401_Low_Platelet_Count
PX161401080400 Low platelet count N/A
PX161401_Low_White_Blood_Cell_Count
PX161401080300 If yes or still present Low white blood cell count N/A
PX161401_Mental_Illness
PX161401140000 Mental illness (requiring hospital more
admission) or psychosis or hallucinations show less
N/A
PX161401_Mononucleosis
PX161401160000 Mononucleosis (mono) N/A
PX161401_Mouth_Sores
PX161401030000 Sores in mouth for more than 2 weeks N/A
PX161401_Multiple_Miscarriages
PX161401520000 Multiple miscarriages N/A
PX161401_Myasthenia_Gravis
PX161401280000 Myasthenia gravis N/A
PX161401_Osteoarthritis
PX161401260000 Osteoarthritis Variable Mapping
PX161401_Pernicious_Anemia
PX161401480000 Pernicious anemia Variable Mapping
PX161401_Phlebitis
PX161401540000 Phlebitis Variable Mapping
PX161401_Pleurisy
PX161401050000 Pain for more than a few days when taking more
deep breath (pleurisy) show less
N/A
PX161401_Poison_Ivy
PX161401220000 Poison ivy N/A
PX161401_Positive_Syphilis_Blood_Test
PX161401120000 Positive blood test for syphilis (VDRL or RPR) N/A
PX161401_Positive_Tuberculosis_Skin_Test
PX161401110000 Positive skin test for tuberculosis more
(tuberculin, PPD, or TINE test) show less
Variable Mapping
PX161401_Prominent_Rash_On_Cheeks
PX161401010000 Prominent rash on cheeks for more than 1 month N/A
PX161401_Protein_In_Urine
PX161401060000 Protein in urine Variable Mapping
PX161401_Psoriasis
PX161401180000 Psoriasis Variable Mapping
PX161401_Pulmonary_Embolus
PX161401550000 Pulmonary embolus Variable Mapping
PX161401_Rapid_Hair_Loss
PX161401150000 Rapid hair loss NOT due to chemotherapy N/A
PX161401_Recurrent_Chest_Pain
PX161401300000 Recurrent chest pain N/A
PX161401_Recurrent_Diarrhea
PX161401350000 Recurrent diarrhea Variable Mapping
PX161401_Recurrent_Heart_Burn
PX161401330000 Recurrent heart burn N/A
PX161401_Recurrent_Urinary_Tract_Infections
PX161401410000 Recurrent urinary tract infections N/A
PX161401_Recurrent_Vaginitis
PX161401420000 Recurrent vaginitis N/A
PX161401_Scleroderma
PX161401190000 Scleroderma Variable Mapping
PX161401_Seasonal_Allergies
PX161401620000 Seasonal allergies (or hay fever) Variable Mapping
PX161401_Seizure
PX161401130000 Seizure, convulsion, or fit Variable Mapping
PX161401_Sinus_Problems
PX161401630000 Sinus problems Variable Mapping
PX161401_Sjogrens_Syndrome
PX161401580000 Sjogren's syndrome Variable Mapping
PX161401_Skin_BreaksOut_In_Sun
PX161401020000 Skin breaks out in the sun (not sunburn) Variable Mapping
PX161401_Slow_Heart_Beat
PX161401290000 Slow heart beat (less than 50 beats per minute) N/A
PX161401_Spleen_Removed
PX161401680000 Spleen removed N/A
PX161401_Stroke
PX161401560000 Stroke Variable Mapping
PX161401_Thyroid problems
PX161401500000 Thyroid problems Variable Mapping
PX161401_Ulcer
PX161401340000 Ulcer (stomach or duodenal) Variable Mapping
PX161401_Varicose_Veins
PX161401660000 Varicose veins Variable Mapping
PX161401_Vitiligo
PX161401200000 Vitiligo N/A
Infectious Diseases and Immunity
Measure Name

Personal and Family History of Autoimmune and Inflammatory Disorders

Release Date

November 12, 2010

Definition

This measure is a symptom, disease, and condition checklist to assess a respondent's personal and family history of autoimmune and inflammatory disorders.

Purpose

This measure can be used to determine the personal and family history of lupus, rheumatoid arthritis, and selected other autoimmune diseases.

Keywords

personal history, Family History, Autoimmunity, Inflammatory Disorders, Infectious Diseases and Immunity

Measure Protocols
Protocol ID Protocol Name
161401 Personal and Family History of Autoimmune and Inflammatory Disorders
Publications

There are no publications listed for this protocol.