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Living With Sickle Cell Disease in the COVID-19 Pandemic

NCT04417673 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 186

Last updated 2026-04-08

No results posted yet for this study

Summary

Background:

Sickle cell disease (SCD) is a chronic illness. It affects about 100,000 people in the United States. People with SCD have red blood cells that are sickle-shaped and impaired in their function. This results in a lifetime of complications that affect every organ system. People with SCD also are at greater risk for respiratory infections and lung problems. Researchers want to study how this population s stress, anxiety, fear, pain, sleep, and health care use are being affected by the COVID-19 pandemic.

Objective:

To study the extent and impact of life changes induced by the COVID-19 pandemic on people living with SCD in the U.S.

Eligibility:

People age 18 and older with SCD who live in the U.S.

Design:

Participants will complete a survey online. The questions will focus on the following:

Medical history

Mental and physical health

Demographics

Stress

Resilience

Health care use

COVID-19

Beliefs about medical mistrust and participation in research.

At the end of the survey, participants will be asked if they would like to take the survey again in the future. If they reply "yes," then they will be contacted by the study team in 6-9 months to take the survey again. They may complete the survey again in 6-8 months, 12-15 months, and 18-21 months.

The survey should take less than 40 minutes to complete.

Participants' data will be coded to protect their privacy. The coded data may be shared with other researchers.

Conditions

Sponsors & Collaborators

  • National Human Genome Research Institute (NHGRI)

    lead NIH

Principal Investigators

  • Ashley J Buscetta, C.R.N.P. · National Human Genome Research Institute (NHGRI)

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2020-06-15
Primary Completion
2022-05-18
Completion
2022-05-18

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04417673 on ClinicalTrials.gov