Protocol - Personal and Family History of Autoimmune and Inflammatory Disorders
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
This protocol is freely available; permission not required for use.
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) | [ ] | [ ] | [ ] | ||
| [ ] [ ] [ ] [ ] | [ ] [ ] [ ] [ ] | [ ] [ ] [ ] [ ] | ||
| 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 |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
| ___ ___ | ___ ___ | |
Personnel and Training Required
None
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|---|---|---|
| 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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX161401_Anemia | ||||
| PX161401470000 | Anemia | Variable Mapping | ||
| PX161401_Anxiety | ||||
| PX161401450000 | Anxiety or panic disorder | Variable Mapping | ||
| PX161401_Arthritis | ||||
| PX161401250000 | Arthritis | 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_Chronic_Fatigue | ||||
| PX161401170000 | Chronic fatigue | Variable Mapping | ||
| PX161401_Depression | ||||
| PX161401430000 | Depression | Variable Mapping | ||
| PX161401_Diabetes | ||||
| PX161401490000 | Diabetes | Variable Mapping | ||
| PX161401_Dry_Eyes | ||||
| PX161401590000 | Dry eyes | Variable Mapping | ||
| PX161401_False_Teeth | ||||
| PX161401610000 | False teeth | Variable Mapping | ||
| 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_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_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_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_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_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_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_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_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_Fever_Blisters_On_Lips | ||||
| PX161401210000 | Fever blisters on lips | Variable Mapping | ||
| PX161401_Heart_Attack | ||||
| PX161401310000 | Heart attack | Variable Mapping | ||
| PX161401_High_Blood_Pressure | ||||
| PX161401530000 | High blood pressure | Variable Mapping | ||
| PX161401_Infertility | ||||
| PX161401510000 | Infertility | Variable Mapping | ||
| PX161401_Jaundice | ||||
| PX161401370000 | Jaundice | 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 | N/A | ||
| PX161401_Low_Platelet_Count | ||||
| PX161401080400 | Low platelet count | N/A | ||
| PX161401_Mental_Illness | ||||
| PX161401140000 | Mental illness (requiring hospital more | N/A | ||
| PX161401_Mononucleosis | ||||
| PX161401160000 | Mononucleosis (mono) | N/A | ||
| PX161401_Mouth_Sores | ||||
| PX161401030000 | Sores in mouth for more than 2 weeks | N/A | ||
| PX161401_Pleurisy | ||||
| PX161401050000 | Pain for more than a few days when taking more | N/A | ||
| PX161401_Positive_Syphilis_Blood_Test | ||||
| PX161401120000 | Positive blood test for syphilis (VDRL or RPR) | N/A | ||
| PX161401_Prominent_Rash_On_Cheeks | ||||
| PX161401010000 | Prominent rash on cheeks for more than 1 month | N/A | ||
| PX161401_Pulmonary_Embolus | ||||
| PX161401550000 | Pulmonary embolus | Variable Mapping | ||
| 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_Scleroderma | ||||
| PX161401190000 | Scleroderma | Variable Mapping | ||
| PX161401_Sinus_Problems | ||||
| PX161401630000 | Sinus problems | Variable Mapping | ||
| PX161401_Slow_Heart_Beat | ||||
| PX161401290000 | Slow heart beat (less than 50 beats per minute) | N/A | ||
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 |