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Insights into Microbiome and Environmental Contributions to
Sickle Cell Disease and Leg Ulcers

INSIGHTS logo, health professionals with patients


Are you living with sickle cell disease (SCD)? Does it impact your life? Are you interested in helping researchers understand how your environment and genome may impact your sickle cell disease? Are you interested in helping researchers understand sickle cell disease leg ulcers? Are you interested in helping researchers identify new treatments to improve the health of others with the disease?

If so, you may want to participate in this study.

We will utilize new sequencing technology and social science approaches to identify microbiome, genomic and environmental contributions to sickle cell disease with a special emphasis on the factors that cause a subset of SCD patients to develop leg ulcers. More broadly, we are seeking to understand how the combinations of factors (i.e., microbiome, genetic modifiers, environmental and social indicators) influence disease progression and leg ulcer formation and health. Your participation may contribute to the development of new treatments and interventions.

  • You have sickle cell disease
  • You are over the age of 18
  • You do or do not have a leg ulcer
What you can expect
  • Skin swabs to test your skin microbiome
  • Leg ulcer, wound care treatment if needed
  • Survey questions about your health care experiences, social and physical environment and current quality of life
  • Blood sample will be collected to study your current health and your genetic variants important in sickle cell disease
Study Location

The study will take place at the National Institutes of Health Clinical Center in Bethesda, Maryland. Compensation will be provided for time and travel.

If you would like to participate in the Insights study, please call the team at 301-451-3997 or email us at

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Last Updated: June 29, 2016