Observational Study of Dietary Intake and Dietary Behaviors in Adults With Sickle Cell Disease

About the study


Sickle Cell Disease (SCD) causes blood cells form a crescent shape. It is caused by a genetic mutation in the hemoglobin gene. People with SCD are at increased risk for illnesses like stroke, chronic pain, and heart problems, as well as decreased overall health and well-being. Researchers want to learn more about how nutrition and diet can help relieve or reduce the symptoms of SCD.


To understand how diet, dietary patterns and behaviors, nutrition, and other related factors in adults with SCD affect their overall health.


Adults aged 18 and older with SCD.


Participants will be screened with a review of their medical records. They will take a pregnancy test if needed.

Participants will have a physical exam and medical history. Their height, weight, and waist and hip circumference will be measured. They can complete this exam (1) via telehealth along with a visit to an outpatient laboratory center or (2) by going to the NIH Clinical Center.

Participants will complete 2 interviews about their diet. They will talk about the foods they ate in the past 24 hours. They will also complete 1 interview about diet-related behaviors such as food shopping and cooking. They can complete the interviews in person, by phone, or by telehealth visit.

Participants will complete surveys about their demographics (such as age and gender), SCD pain, mood, stress, diet, and nutrition. It may take about 1 hour to complete all of the surveys.

Participants will give blood and urine samples. They will need to fast for at least 8 hours overnight before giving blood samples.

Participation will last for about 2 weeks.

Study point of contact

Ralph T Tuason, R.N.
(301) 594-2212
[email protected]
Nicole M Farmer, M.D.
(301) 412-4054
[email protected]


> 18 Years



Study type




participation requirements

In order to be eligible to participate in this study, the participant must:

State their willingness to complete all study procedures for the duration of the study
18 years of age or older at the time of screening
Have a documented clinical diagnosis (upon review of medical records) of SCD or presence of a SCD hemoglobinopathy genotype HbSS, HgSC, HbSB 0 or HBSB+

participation restrictions

The following criteria will exclude any individual from participating in the study:

Less than 18 years of age
Unable to speak, read, write, and/or understand English
Presence of a condition or illness that will hamper the individual from giving informed consent (e.g. cognitive impairment)
SCD trait genotype
Currently undergoing inpatient treatment in any hospital for SCD at the time of screening
Pregnancy at the time of screening

Last updated 2023-01-26