dbGaP Study Accession: phs002658
NIH Institute/Center: NIAID
RADx Data Program: RADx-UP
Release Date: 08/31/2023
DOI: 10.60773/yrkh-gy81
Study Description: Transgender (TG) people are a NIH-designated health disparities population with high morbidity and mortality across multiple health conditions, including HIV infection, mental health, and substance use. These conditions are a product of, and are exacerbated by, historical and ongoing discrimination and inequities in access to healthcare. In early 2020, Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) and Coronavirus Disease 2019 (COVID-19) was recognized as a global pandemic. To date, no data exists on COVID-19 disease in TG people. There is an urgent need to understand the burden of COVID-19 disease, investigate its impact on other health conditions and vulnerabilities burdening TG populations, and identify future public health intervention targets. This project aimed to fill this gap. To accomplish these goals, disparities in access to testing among TG people were identified and mitigated. The parent LITE study enrolled a baseline sample of more than 1,500 TG women in the eastern and southern U.S. to assess HIV risk across 24 months of biobehavioral follow-up using technology-enhanced, digital methods of data capture. Leveraging the LITE infrastructure and in partnership with two community-based organizations, this research aided in the development of LITE-CONNECT, a rapid, community-engaged mixed-methods assessment that enrolled over 2,000 TG men and women across the U.S. The objective of this supplemental study was to characterize access and barriers to COVID-19 testing, provide access to and evaluate the use of home-based COVID-19 antibody testing to identify past infection and potential immunity, connect TG men and women to available community-based COVID-19 testing and support services, and identify community-based solutions to support access to COVID-19 testing, interventions, and care among TG people. Results from this study were rapidly used to inform community-based efforts and national COVID-19 response that were inclusive of TG people. The research provided critical and timely insights about COVID-19 disease in TG people in a space in which almost no information currently exists. Early identification of disparities in COVID-19 morbidity and in access to COVID-19 testing and care was critical to ensuring access to services as the pandemic continues. Existing infrastructure and community collaborations were leveraged to gather new data, including unprecedented data from TG men, to guide urgently needed interventions to improve and optimize the health and wellbeing of TG people in the context of the COVID-19 pandemic.
Updated Date: 04/17/2024
Principal Investigator: Wirtz, Andrea
Has Data Files: Yes
Study Domain: At-Home or Over-the-Counter (OTC) Self-Testing; Community Outreach Programs
Data Collection Method: Survey
Keywords: Burden of Illness; Disparities in Access to Testing
Study Design: Longitudinal Cohort
Multi-Center Study: Yes
Study Sites: Brigham Womens Hospital; UNC Chapel Hill (Note: data are only collected and managed by JHU).
Data Types: Behavioral; Clinical; Questionnaire or Survey; Social
Study Start Date: 09/23/2020
Study End Date: 07/31/2022
Species: Human
Sample Size: 2133
Study Population Focus: Adults; Older Adults or Elderly; People Living with HIV/AIDS; Sexual or Gender Minorities
Publication URL: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9790855/
Acknowledgement Statement: This study was supported through funding, 3UH3AI133669-04S1, for the National Institute of Allergy and Infectious Diseases (NIAID) as part of the RADx-UP program. Research conducted under the LITE Connect study was led by Andrea Wirtz (mPI), Johns Hopkins University and Sari Reisner (mPI), Brigham Women's Hospital with co-investigators, Carter Brown, Black Transgender Advocacy Coalition; Marissa Miller, TransSolutions Center; Tonia Poteat, UNC Chapel Hill; and Will Beckham, Johns Hopkins University. We acknowledge the dedication of Dee Adams, study staff, and Brad Thorson and colleagues at Molecular Testing Labs. We appreciate the time and contributions of study participants without whom this research would not be possible. Approved users should acknowledge the provision of data access by dbGaP for accession phs002658.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-20-135
NIH Grant or Contract Number(s): 3UH3AI133669-04S1
Consent/Data Use Limitations: General Research Use
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_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_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_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? |
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? |
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. ) |
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. |
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_date_mdy | - |
alcohol_daysperweek | - |
consentdt_mdy | - |
consent_given | - |
covid_pandemic_challenges_abod_2 | - |
covid_pandemic_challenges_wate_2 | - |
covid_test_approval | - |
covid_test_collect_datetime | - |
covid_test_collection_setting | - |
covid_test_date_mdy | - |
covid_test_performed_location | - |
covid_test_result | - |
covid_test_result_datetime | - |
covid_test_result_sent_datetime | - |
covid_test_specimen_collector | - |
covid_test_specimen_type | - |
covid_test_study_setting | - |
covid_test_tar_dis_stat_2___1 | - |
covid_test_type | - |
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 | - |
hlthstat_date_mdy | - |
household_congregate_3 | - |
household_homeless | - |
housing_date_mdy | - |
isolate_maintain_job | - |
jobloss_covid19_2 | - |
language_english | - |
language_home___1 | - |
language_home___2 | - |
language_home___3 | - |
language_home___4 | - |
language_home___5 | - |
language_home___6 | - |
language_home___7 | - |
language_home___8 | - |
language_home___9 | - |
language_home___90 | - |
language_home___99 | - |
language_spoken___10 | - |
language_spoken___9 | - |
med_hx_date_mdy | - |
needed_healthcare | - |
needed_mhcare | - |
positivemonth_covidtest_2 | - |
positiveyear_covidtest_3 | - |
quarantine_maintain_job | - |
race_ethn_asian_detail_3___1 | - |
race_ethn_asian_detail_3___2 | - |
race_ethn_asian_detail_3___3 | - |
race_ethn_asian_detail_3___4 | - |
race_ethn_asian_detail_3___5 | - |
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___8 | - |
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 | - |
recentmonth_covidtest_2 | - |
recentresult_covidtest | - |
recentyear_covidtest_3 | - |
redcap_event_name | - |
redcap_repeat_instance | - |
redcap_repeat_instrument | - |
self_reported_health_status_assessment | - |
sex_orient_id | - |
smoker_number | - |
sociodem_date_mdy | - |
test_accesseasy_2 | - |
test_accesswhere_2 | - |
test_date_mdy | - |
tested_for_covid | - |
tested_positive_for_covid | - |
vacc_date_mdy | - |
vaccine_avail | - |
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___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___99 | - |
work_closecont_2 | - |
work_ppe_2 | - |
work_ppe_date_mdy | - |
work_wash_2 | - |