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Dietary Intake and Dietary Behaviors in Adults With Sickle Cell Disease

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

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years to 120 Years
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Time periods mentioned: 2 weeks
  • Procedures mentioned: Physical exams, Interviews, Phone or video check-ins, Questionnaires, Urine samples, Blood draws

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "Participants will have a physical exam and medical history."
  • "Participants will complete 2 interviews about their diet."
  • "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."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study looks at how diet, eating habits, and nutrition relate to health in adults with sickle cell disease (SCD). SCD is an inherited condition that makes blood cells crescent-shaped. The study is for adults age 18 and older and lasts about 2 weeks.

Background: 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. Objective: To understand how diet, dietary patterns and behaviors, nutrition, and other related factors in adults with SCD affect their overall health. Eligibility: Adults aged 18 and older with SCD. Design: 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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Be age 18 or older when checked for the study.
  • Have SCD confirmed by medical records or one of the SCD gene types listed by the study.
  • Be willing to complete all study steps.

Who can't join

  • Be younger than 18.
  • Be unable to speak, read, write, or understand English.
  • Have a condition that prevents you from understanding the study and agreeing to join.
  • Have sickle cell trait rather than sickle cell disease.
  • Be staying in a hospital for SCD treatment when checked for the study.
  • Be pregnant when checked for the study.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

* INCLUSION CRITERIA: In order to be eligible to participate in this study, the participant must: 1. State their willingness to complete all study procedures for the duration of the study 2. 18 years of age or older at the time of screening 3. 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+ EXCLUSION CRITERIA: The following criteria will exclude any individual from participating in the study: 1. Less than 18 years of age 2. Unable to speak, read, write, and/or understand English 3. Presence of a condition or illness that will hamper the individual from giving informed consent (e.g. cognitive impairment) 4. SCD trait genotype 5. Currently undergoing inpatient treatment in any hospital for SCD at the time of screening 6. Pregnancy at the time of screening

Study sites (1)

MD