A Longitudinal Survey Study on Living With Sickle Cell Disease in the COVID-19 Pandemic

Study point of contact

Vence L Bonham, J.D.
(301) 594-3973
[email protected]


1 United States site


> 18 Years

Study type






About the study


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.

participation requirements

In order to be eligible to participate in this study, an individual must meet all of the
following criteria:

1. Stated willingness to comply with all study procedures and availability for the
duration of the study

2. Adults, aged 18 years or older, of any race, sex, gender, ethnicity, and/or

3. Sickle Cell Disease, any genotype

4. Current Resident of the United States

participation restrictions

An individual who meets any of the following criteria will be excluded from participation
in this study:

1. Minors less than 18 years of age

2. Adults with Sickle Cell Trait, Beta Thalassemia, Alpha Thalassemia or any blood
disorder other than Sickle Cell Disorder

3. Adults who lack access to the Internet

4. Live outside the United States (unless they are from the INSIGHTS Study)


  • Bethesda, Maryland, United States, National Human Genome Research Institute (NHGRI), 20892