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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.

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

[ ] [ ] [ ]

Athlete's 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

[ ] [ ] [ ]

Sjögren's 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 family's 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 father's 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

Sjögren's 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

Addison's 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

Mother's Side

Father's 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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Protocol Name from Source:

The Expert Review Panel has not reviewed this measure yet.

Availability:

Publicly available

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

Life Stage:

Adult

Participants:

Adults, aged 18 years and older

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.

Selection Rationale

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

Language

English, Spanish

Standards
StandardNameIDSource
Common Data Elements (CDE) Immunology Autoimmune Disease Personal Medical History Assessment Description Text 3151168 CDE Browser
Common Data Elements (CDE) Immunology Inflammatory Disease Personal Medical History Assessment Description Text 3151169 CDE Browser
Common Data Elements (CDE) Immunology Autoimmune Disease Family Medical History Assessment Description Text 3151170 CDE Browser
Common Data Elements (CDE) Immunology Inflammatory Disease Family Medical History Assessment Description Text 3151171 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Pers fam hx autoimm inflamm proto 62892-5 LOINC
Derived Variables

None

Process and Review

The Expert Review Panel has not reviewed this measure yet.

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