Living With Sickle Cell Disease in the COVID-19 Pandemic

  • End date
    Dec 31, 2024
  • participants needed
  • sponsor
    National Human Genome Research Institute (NHGRI)
Updated on 13 June 2021



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.


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


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


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

Medical history

Mental and physical health




Health care use


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.


Study Description:

Longitudinal online survey of adults living with sickle cell disease (SCD) in the United States. The objective of the study is to examine the extent and impact of life changes induced by the COVID-19 pandemic on individuals living with SCD. It is our hypotheses that adults living with SCD will be adversely impacted by COVID-19 in terms of stress, anxiety, coping and sleep. Individuals living with SCD will have higher fear, isolation, anxiety and stress if they have higher clinical severity. In-person healthcare utilization for individuals with SCD will be reduced during the COVID-19 pandemic. Virtual healthcare utilization will increase for SCD individuals but satisfaction with healthcare quality will decrease.


Primary Objective: The primary objective of the study is to examine the extent and impact of life changes induced by the COVID-19 pandemic on individuals living with sickle cell disease (SCD). These objectives are: (1) To assess how the COVID-19 pandemic affects the psychological well-being of individuals living with SCD; (2) To examine the association between clinical severity of SCD and an individual s response to the COVID-19 pandemic; (3) To investigate whether news and other media consumption during the COVID-19 pandemic influence individual psychological well-being; (4) To determine the extent of COVID-19 induced trauma in individuals living with SCD, and its effect on health behaviors and psychological well-being; (5) To investigate the impact of the COVID-19 pandemic on healthcare utilization for SCD individuals.

Secondary Objectives: Our secondary objectives broadly examine the attitudes and viewpoints of individuals with SCD on issues of trust and the future of medical advancements for COVID-19 treatment(s). These will be examined in conjunction with the primary objectives and are: (1) To examine the role that medical and government mistrust may have on the experiences and behaviors of individuals with SCD during the pandemic; (2) To assess community attitudes towards clinical trials for COVID-19.


The endpoints for the study are divided into psychosocial measures as well as physical measures and are: (1) Stress; (2) Anxiety; (3) Depressive symptomology; (4) Sleep; (5) Pain episodes and clinical severity; (6) Healthcare utilization (primary care, emergency

department, telemedicine, other). The secondary endpoint is an examination of the receptivity of SCD individuals to future health recommendations and medical treatment(s).

Study Population: Sample up to 1000 adults living with SCD in the United States, 18 years of age or older.

Description of Sites/Facilities Enrolling Participants:

Two cohorts will be recruited for this study: (1) Participants in the INSIGHTS study (NCT02156102) (2) Participants recruited by Sickle Cell 101 and/or from the NIH Study (NCT01633021), and/or from other advocacy groups or doctor s offices. Sickle Cell 101 (SC101) is a Silicon Valley-based non-profit organization that specializes in sickle cell education for the patients, caregivers, healthcare professionals, and other key stakeholders affected by sickle cell disease and trait globally.

Study Duration: Proposed enrollment opening June 1, 2020 - proposed end of data analyses from fourth wave of the study June 2022.

Participant Duration: Each participant will be invited to take the online survey every six-nine months for four data collection periods. Each survey will last 30-45 minutes.

Condition isolation & purification analysis, Pain, SICKLE CELL ANEMIA, Acute Pain Service, ANXIETY NEUROSIS, Anxiety, Anxiety Symptoms, Health Care Utilization, Anxiety Disorders, Sickle Cell Disease, ache, anxiety disorder, anxious, isolation technique, isolation procedure
Clinical Study IdentifierNCT04417673
SponsorNational Human Genome Research Institute (NHGRI)
Last Modified on13 June 2021


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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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