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Study Information

dbGaP Study Accession: phs002786

NIH Institute/Center: NIAMS

RADx Data Program: RADx-UP

DOI: 10.60773/wtx3-4882

Release Date: 08/30/2023

Study Description: People living with an autoimmune disease, including those with systemic lupus erythematosus (SLE), have been especially impacted by the COVID-19 pandemic. The purpose of this research project was to identify barriers and facilitators to COVID-19 testing and vaccination among people living with SLE using both qualitative and quantitative methods. This study also evaluated the efficacy of a novel peer-led intervention to enhancing these behaviors among people living with SLE and others in their household/social network using a randomized controlled trial design. The aims of this project were achieved by leveraging an existing patient roster of over 2500 people living with SLE in Birmingham, Alabama. This study also recruited people living with SLE in New Orleans, Louisiana. This research has broader implications for testing/vaccination in clinical populations.

Updated Date: 04/17/2024

Principal Investigator: Chae, David H

Has Data Files: Yes

Study Domain: Comorbidities; Vaccination Rate or Uptake

Data Collection Method: Survey

Keywords: Autoimmune Disease; Barriers to Testing; Barriers to Vaccination; Comorbid Populations; Systemic Lupus Erythematosus (SLE)

Study Design: Case-Control

Multi-Center Study: No

Data Types: Behavioral; Questionnaire or Survey; Social

Study Start Date: 09/12/2021

Study End Date: 08/31/2023

Species: Human

Estimated Cohort Size: 1235

Study Population Focus: Adults; African Americans; Older Adults or Elderly; Underserved or Vulnerable Populations

Acknowledgement Statement: This study was supported through funding, 3R01AR065493-07S2, for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) as part of the RADx-UP program. Approved users should acknowledge the provision of data access by dbGaP for accession phs002786.v1.p1, and the NIH RADx Data Hub. Approved users should also acknowledge the specific version(s) of the dataset(s) obtained from the NIH RADx Data Hub.

Funding Opportunity Announcement (FOA) Number: PA-11-260

NIH Grant or Contract Number(s): 3R01AR065493-07S2

Consent/Data Use Limitations: General Research Use

Variable Information
Total Variables: 249
Study Variables Information Table
Variable Name
Label
nih_record_idUser ID
nih_raceWhat is your race?
nih_ethnicityAre you of Hispanic or Latino origin? May include Spanish origin.
nih_ageWhat is your age?
nih_sexWhat is your biological sex assigned at birth?
nih_educationWhat is the highest level of education you have achieved outside or in the United States?
nih_employmentPlease specify your employment status.
nih_insuranceWhat kind of health insurance do you have?
nih_disabilityDo you have a disability, including serious physical or mental conditions, that interfere with your ability to carry out daily activities?
nih_deafAre you deaf or do you have serious difficulty hearing?
nih_blindAre you blind or do you have serious difficulty seeing, even when wearing glasses?
nih_memoryBecause of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions?
nih_walk_climbDo you have serious difficulty walking or climbing stairs?
nih_dress_batheDo you have difficulty dressing or bathing?
nih_errandBecause of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping?
nih_vape_freqVaping Frequency: Do you now use electronic cigarettes every day, some days, rarely, or not at all?
nih_cig_smoke_freqNicotine Frequency: Do you now smoke cigarettes?
nih_smoking_ynDo you use any tobacco/nicotine products (including cigarettes, cigars, e-cigarettes, etc)?
nih_history_smokingHistory of Smoking
nih_alcohol_ynAlcohol use (Yes or No)
nih_lifetime_use_alcoholIn your entire life, have you had at least 1 drink of any kind of alcohol, not counting small tastes or sips? (Yes or No)
nih_alcohol_frequencyHow often did you have a drink containing alcohol ?
nih_asthmaAsthma
nih_cancer_past_yrCancer diagnosis and/or treatment within the past 12 months
nih_cardiovascular_diseaseCardiovascular disease
nih_chronic_kidney_diseaseChronic kidney disease
nih_diabetesDiabetes
nih_hypertensionHypertension
nih_mental_health_disorderMental health disorder
nih_sickle_cell_diseaseSickle cell disease
nih_pregnancyPregnancy status
nih_immunocompromisedImmunocompromised condition
nih_autoimmAutoimmune disease
nih_copdChronic obstructive pulmonary disease (COPD)
nih_chronic_lungOther chronic lung disease
nih_depressionDepression
nih_alc_sub_abuseAlcohol or substance use disorder
nih_iv_drug_useIntravenous drug use
nih_other_chronic_condOther chronic condition
nih_health_statusWould you say that (your) health in general is excellent, very good, good, fair, or poor?
nih_heightWhat is your height in inches?
nih_weightWhat is your weight in pounds?
age_yrsAge For babies less than 1 year old, do not write the age in months. Write 0 as the age. (Years)
bio_sex_birth_2What was your sex assigned at birth on your birth certificate?
cc_asthma_2Asthma
cc_asud_2Alcohol or substance use disorder
cc_autoimm_2Autoimmune disease
cc_cancer_2Cancer diagnosis and/or treatment within the past 12 months
cc_chronickd_2Chronic kidney disease (CKD)
cc_clung_2Other chronic lung disease
cc_copd_2Chronic obstructive pulmonary disease (COPD)
cc_cvd_2Cardiovascular disease (CVD or heart disease)
cc_depression_2Depression
cc_diabetes_2Diabetes
cc_hypertension_2Hypertension (HTN, high blood pressure)
cc_imm_2Immunocompromised condition
cc_intrav_2Intravenous drug use
cc_otherchroniccond_2Other chronic condition
cc_othermh_2Other mental health disorder
cc_sickle_2Sickle Cell Anemia
current_employment_statusWe would like to know about what you do -- are you working now, looking for work, retired, keeping house, a student, or something else?
disability_blind_2Are you blind, or do you have serious difficulty seeing, even when wearing glasses?
disability_deaf_2Are you deaf, or do you have serious difficulty hearing?
disability_decisions_2Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions? (5 years of age or older)
disability_dress_2Do you have difficulty dressing or bathing? (5 years of age or older)
disability_errands_2Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping? (15 years of age or older)
disability_walking_2Do you have serious difficulty walking or climbing stairs? (5 years of age or older)
hi_coverage_typeWhat is the primary kind of health insurance or health care plan that you have now? (Exclude plans that pay for only one type of Service (such as, nursing home care, accidents, family planning, or dental care) and plans that only provide extra cash when hospitalized. )
lifetime_use_alcoholIn your entire life, have you had at least 1 drink of any kind of alcohol, not counting small tastes or sips?
pregnancy_statusAre you currently pregnant?
race_ethn_hispanicAre you of Hispanic, Latino, or Spanish origin?
self_reported_disabilityDo you have a disability that interferes with your ability to carry out daily activities? Examples of daily activities include walking, climbing stairs, shopping, balancing a checkbook, bathing or dressing.
self_reported_height_feetFeet
self_reported_height_inchesInches
self_reported_weight_kgsHow much do you weigh without clothes or shoes? If you are currently pregnant, how much did you weigh before your pregnancy?
self_reported_weight_lbsHow much do you weigh without clothes or shoes? If you are currently pregnant, how much did you weigh before your pregnancy?
smoker_cur_stat_2Do you now smoke cigarettes?
vaper_cur_statDo you now use electronic cigarettes every day, some days, rarely, or not at all?
alcohol_daysperweek-
consent_given-
consent_ident-
consent_recontact-
consent_zip_2-
covid_pandemic_challenges_abod_2-
covid_pandemic_challenges_food_2-
covid_pandemic_challenges_wate_2-
covid_vaccine-
cov_pan_chal_hlth_2-
cov_pan_chal_med_2-
cov_pan_chlng_trans_2-
cov_tst_mthd_2-
edu_years_of_school-
employed_ew-
employed_healthcare_2-
family_income-
flu_vaccinehistind_2-
flu_vaccine_season_3-
gender_identity_term_2-
hi_loss_covid-
household_famgen_3-
household_homeless-
isolate_maintain_job-
jobloss_covid19_2-
language_home___1-
language_home___10-
language_home___11-
language_home___12-
language_home___13-
language_home___14-
language_home___15-
language_home___16-
language_home___17-
language_home___18-
language_home___19-
language_home___2-
language_home___20-
language_home___21-
language_home___22-
language_home___23-
language_home___24-
language_home___25-
language_home___26-
language_home___27-
language_home___28-
language_home___29-
language_home___3-
language_home___30-
language_home___31-
language_home___32-
language_home___33-
language_home___34-
language_home___35-
language_home___36-
language_home___37-
language_home___38-
language_home___39-
language_home___4-
language_home___40-
language_home___41-
language_home___42-
language_home___43-
language_home___44-
language_home___45-
language_home___46-
language_home___5-
language_home___6-
language_home___7-
language_home___8-
language_home___9-
language_home___90-
language_home___99-
language_pref-
positiveyear_covidtest_3-
quarantine_maintain_job-
race_ethn_asian_detail_3___1-
race_ethn_asian_detail_3___10-
race_ethn_asian_detail_3___11-
race_ethn_asian_detail_3___12-
race_ethn_asian_detail_3___13-
race_ethn_asian_detail_3___14-
race_ethn_asian_detail_3___15-
race_ethn_asian_detail_3___16-
race_ethn_asian_detail_3___17-
race_ethn_asian_detail_3___18-
race_ethn_asian_detail_3___19-
race_ethn_asian_detail_3___2-
race_ethn_asian_detail_3___20-
race_ethn_asian_detail_3___21-
race_ethn_asian_detail_3___22-
race_ethn_asian_detail_3___3-
race_ethn_asian_detail_3___4-
race_ethn_asian_detail_3___5-
race_ethn_asian_detail_3___6-
race_ethn_asian_detail_3___7-
race_ethn_asian_detail_3___8-
race_ethn_asian_detail_3___9-
race_ethn_asian_detail_3___99-
race_ethn_hispanic_detail_2___1-
race_ethn_hispanic_detail_2___2-
race_ethn_hispanic_detail_2___3-
race_ethn_hispanic_detail_2___4-
race_ethn_hispanic_detail_2___5-
race_ethn_hispanic_detail_2___6-
race_ethn_hispanic_detail_2___7-
race_ethn_hispanic_detail_2___99-
race_ethn_islander_detail_2___1-
race_ethn_islander_detail_2___10-
race_ethn_islander_detail_2___11-
race_ethn_islander_detail_2___12-
race_ethn_islander_detail_2___13-
race_ethn_islander_detail_2___14-
race_ethn_islander_detail_2___2-
race_ethn_islander_detail_2___3-
race_ethn_islander_detail_2___4-
race_ethn_islander_detail_2___5-
race_ethn_islander_detail_2___6-
race_ethn_islander_detail_2___7-
race_ethn_islander_detail_2___8-
race_ethn_islander_detail_2___9-
race_ethn_islander_detail_2___99-
race_ethn_race___1-
race_ethn_race___15-
race_ethn_race___2-
race_ethn_race___3-
race_ethn_race___4-
race_ethn_race___5-
race_ethn_race___99-
recentresult_covidtest-
recentyear_covidtest_3-
redcap_event_name-
redcap_repeat_instance-
redcap_repeat_instrument-
self_reported_health_status_assessment-
self_reported_height_coded-
self_reported_weight_units_2-
sex_orient_id-
smoker_number-
test_accesseasy_2-
test_accesswhere_2-
tested_for_covid-
tested_positive_for_covid-
vaccine_concerns_3___1-
vaccine_concerns_3___10-
vaccine_concerns_3___2-
vaccine_concerns_3___3-
vaccine_concerns_3___4-
vaccine_concerns_3___5-
vaccine_concerns_3___6-
vaccine_concerns_3___7-
vaccine_concerns_3___8-
vaccine_concerns_3___9-
vaccine_concerns_3___96-
vaccine_concerns_3___99-
vaccine_reasons_3___1-
vaccine_reasons_3___10-
vaccine_reasons_3___11-
vaccine_reasons_3___2-
vaccine_reasons_3___3-
vaccine_reasons_3___4-
vaccine_reasons_3___5-
vaccine_reasons_3___6-
vaccine_reasons_3___7-
vaccine_reasons_3___8-
vaccine_reasons_3___9-
vaccine_reasons_3___96-
vaccine_reasons_3___99-
work_closecont_2-
work_ppe_2-
work_wash_2-
Study Documents
Study Documents Table
Document
Document Name
File Size
Download
Study Documentationphs002786_Project S2_Protocol.pdf169.35 KB
READMEprojectS2_README.html274.62 KB
Data Files
Total Files: 6
Data Files: 2
Metadata Files: 2
Dictionary Files: 2
Study Datasets Table
File Name
File Type
File Format(s)
# of Records
# of Variables
Metadata
Dictionary
projectS2_DATA_transformcopy.csvTabular Data - Harmonizedcsv117
projectS2_DATA_origcopy.csvTabular Data - Non-harmonizedcsv117