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Brain imaging study to monitor sickle cell disease and treatment responses

Plain-English translation of NCT04166526 on ClinicalTrials.gov ↗ · Source last updated December 2025 · Translation generated June 2026 · How we translate trials

Read our Sickle Cell Disease research guide →

What is this trial?

Researchers at Boston Children's Hospital are studying new ways to monitor sickle cell disease by looking at how it affects blood flow and oxygen delivery in the brain. The study uses two special imaging techniques — an MRI scan and advanced optical sensors — to measure how well the brain is getting oxygen and how blood vessels are working. This information could help doctors choose the best treatment for each person and tell whether a treatment is actually working.

Sickle cell disease damages blood vessels and reduces oxygen delivery throughout the body, with the brain being especially vulnerable. Right now, doctors don't have good tools to measure whether a treatment is actually improving how blood flows and oxygen is delivered in the brain for each individual patient. This study aims to develop those tools so doctors can personalize treatment decisions and monitor whether treatments are really helping.

Do you qualify?

You likely qualify if…

you are between 8 and 18 years old
you have been diagnosed with sickle cell disease (for Groups 2, 3, or 4) or you are a typically developing child without sickle cell disease (for Group 1)
if you have sickle cell disease and receive transfusions, you are actively receiving chronic transfusions
if you have had gene therapy, at least one month has passed since your treatment
if you have untreated sickle cell disease, you have not had a blood transfusion in the past 3 months

You likely don't qualify if…

you have any electrical implants like a pacemaker or insulin pump
you have metal implants or metal fragments in your body, such as surgical clips, artificial heart valves, or shrapnel
you are pregnant, planning to become pregnant, or breastfeeding
you have a condition that makes you likely to have seizures or you feel claustrophobic in enclosed spaces
you need sedation to undergo an MRI scan

What participation looks like

You would come for one visit lasting about an hour. During this visit, you'll lie in an MRI machine (a large tube that takes pictures of your brain) while wearing special sensors that measure oxygen levels and blood flow. The MRI is painless but can be loud, and the enclosed space might feel tight. The sensors attached to your head are completely non-invasive. The whole visit takes approximately one hour.

Brain imaging study to monitor sickle cell disease and treatment responses

What is this trial?

Do you qualify?

What participation looks like

Trial locations(1 site)