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
Variable Name | Label |
|---|---|
| nih_record_id | User ID |
| nih_race | What is your race? |
| nih_ethnicity | Are you of Hispanic or Latino origin? May include Spanish origin. |
| nih_age | What is your age? |
| nih_sex | What is your biological sex assigned at birth? |
| nih_education | What is the highest level of education you have achieved outside or in the United States? |
| nih_employment | Please specify your employment status. |
| nih_insurance | What kind of health insurance do you have? |
| nih_disability | Do you have a disability, including serious physical or mental conditions, that interfere with your ability to carry out daily activities? |
| nih_deaf | Are you deaf or do you have serious difficulty hearing? |
| nih_blind | Are you blind or do you have serious difficulty seeing, even when wearing glasses? |
| nih_memory | Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions? |
| nih_walk_climb | Do you have serious difficulty walking or climbing stairs? |
| nih_dress_bathe | Do you have difficulty dressing or bathing? |
| nih_errand | Because 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_freq | Vaping Frequency: Do you now use electronic cigarettes every day, some days, rarely, or not at all? |
| nih_cig_smoke_freq | Nicotine Frequency: Do you now smoke cigarettes? |
| nih_smoking_yn | Do you use any tobacco/nicotine products (including cigarettes, cigars, e-cigarettes, etc)? |
| nih_history_smoking | History of Smoking |
| nih_alcohol_yn | Alcohol use (Yes or No) |
| nih_lifetime_use_alcohol | In 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_frequency | How often did you have a drink containing alcohol ? |
| nih_asthma | Asthma |
| nih_cancer_past_yr | Cancer diagnosis and/or treatment within the past 12 months |
| nih_cardiovascular_disease | Cardiovascular disease |
| nih_chronic_kidney_disease | Chronic kidney disease |
| nih_diabetes | Diabetes |
| nih_hypertension | Hypertension |
| nih_mental_health_disorder | Mental health disorder |
| nih_sickle_cell_disease | Sickle cell disease |
| nih_pregnancy | Pregnancy status |
| nih_immunocompromised | Immunocompromised condition |
| nih_autoimm | Autoimmune disease |
| nih_copd | Chronic obstructive pulmonary disease (COPD) |
| nih_chronic_lung | Other chronic lung disease |
| nih_depression | Depression |
| nih_alc_sub_abuse | Alcohol or substance use disorder |
| nih_iv_drug_use | Intravenous drug use |
| nih_other_chronic_cond | Other chronic condition |
| nih_health_status | Would you say that (your) health in general is excellent, very good, good, fair, or poor? |
| nih_height | What is your height in inches? |
| nih_weight | What is your weight in pounds? |
| age_yrs | Age For babies less than 1 year old, do not write the age in months. Write 0 as the age. (Years) |
| bio_sex_birth_2 | What was your sex assigned at birth on your birth certificate? |
| cc_asthma_2 | Asthma |
| cc_asud_2 | Alcohol or substance use disorder |
| cc_autoimm_2 | Autoimmune disease |
| cc_cancer_2 | Cancer diagnosis and/or treatment within the past 12 months |
| cc_chronickd_2 | Chronic kidney disease (CKD) |
| cc_clung_2 | Other chronic lung disease |
| cc_copd_2 | Chronic obstructive pulmonary disease (COPD) |
| cc_cvd_2 | Cardiovascular disease (CVD or heart disease) |
| cc_depression_2 | Depression |
| cc_diabetes_2 | Diabetes |
| cc_hypertension_2 | Hypertension (HTN, high blood pressure) |
| cc_imm_2 | Immunocompromised condition |
| cc_intrav_2 | Intravenous drug use |
| cc_otherchroniccond_2 | Other chronic condition |
| cc_othermh_2 | Other mental health disorder |
| cc_sickle_2 | Sickle Cell Anemia |
| current_employment_status | We 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_2 | Are you blind, or do you have serious difficulty seeing, even when wearing glasses? |
| disability_deaf_2 | Are you deaf, or do you have serious difficulty hearing? |
| disability_decisions_2 | Because 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_2 | Do you have difficulty dressing or bathing? (5 years of age or older) |
| disability_errands_2 | Because 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_2 | Do you have serious difficulty walking or climbing stairs? (5 years of age or older) |
| hi_coverage_type | What 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_alcohol | In your entire life, have you had at least 1 drink of any kind of alcohol, not counting small tastes or sips? |
| pregnancy_status | Are you currently pregnant? |
| race_ethn_hispanic | Are you of Hispanic, Latino, or Spanish origin? |
| self_reported_disability | Do 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_feet | Feet |
| self_reported_height_inches | Inches |
| self_reported_weight_kgs | How much do you weigh without clothes or shoes? If you are currently pregnant, how much did you weigh before your pregnancy? |
| self_reported_weight_lbs | How much do you weigh without clothes or shoes? If you are currently pregnant, how much did you weigh before your pregnancy? |
| smoker_cur_stat_2 | Do you now smoke cigarettes? |
| vaper_cur_stat | Do 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
Data Files