Prior to age 20, 11% of children with sickle cell disease (SCD) will have a stroke without recommended preventive care, namely the performance of screening trans-cranial dopplers (TCD) of the intracranial arteries and subsequent chronic transfusion therapy (CTT) or hydroxyurea for those at highest risk (Ohene-Frempong,1998; Adams, 2004; Enninful-Eghan, 2010; Ware 2016). Annual TCDs are indicated in children age 2-16 with HbSS or HbSB0, but screening rates consistently fall well short of this guideline. The DISPLACE study found an average rate of 49.9%, with poor adherence attributed to transportation limitations, school/work demands, complicated and biased scheduling processes, and simple forgetfulness (Kanter, 2021; Phillips, 2021). Surveillance efforts between 2020-23 by the Michigan Department of Health and Human Services (MDHHS) showed similarly abysmal rates between 30-40% in the Detroit area. Previously published quality improvement efforts have focused on better tracking, education, and care coordination with variable success, but all would require fairly significant ongoing effort to sustain success (Singh 2022, Edwards 2024, Vissa 2025, Crosby 2016, Kanter 2023).

The BRAIN Initiative simply relocated TCDs to within the SCD clinic to eliminate barriers to care. An initial plan-do-study-act (PDSA) cycle targeting improved adherence piloted in-clinic TCDs with an ultrasound (US) technologist bringing a machine from the radiology dept. to clinic on specific days. Many overdue TCDs were completed and identified patients with vasculopathy, but limited resources made the program unsustainable and inconsistent. A second PDSA cycle targeted alternate support for the program and an MDHHS grant was secured to start a more dedicated full-time program. A non-imaging TCD machine and US tech are now housed in the clinic, TCDs are completed during patient intake after the tech identifies the need for one, and providers have results before seeing the patient. If a patient attends a single clinic visit in a year, they will have a TCD completed, with the onus completely removed from parents for completing it.

Between 07/2024-07/2025, total TCDs completed increased 90.4% compared to the prior 4-year annual average (156 vs 297 studies, prior 4-year range 119-177). There were 231 patients meeting criteria for needing annual TCDs. Of these 231, 204 had TCDs completed between 07/2024-07/2025. Reasons for not having a TCD were: TCD completed in the 60 days prior to program initiation (5), MRA preferred due to known anatomical limitations (2), and being lost to follow-up > two years (8) or >1 year (8) despite best efforts at contact. Only 4 patients had a clinic visit and did not have a TCD, 3 due to US tech absence, and 1 due to patient illness. Considering as “true misses” only these 4 and those lost to follow up for less than 2 years, 94% of patients requiring TCD had one completed. (n=216). Among those physically seen in the clinic during the year (n=208), 98% had a TCD completed. Excluding those completed sooner than annually due to a prior conditional/abnormal result, the average time overdue prior to BRAIN TCD completion was 434 days (median 107, max 4,101). There were 54 repeat studies performed in this period due to conditional/abnormal results. Four patients were started on CTT due to consecutive abnormal TCDs.

Starting in 01/2025, the US tech began coordinating any additional imaging required, including all magnetic resonance imaging (MRI)/angiography and T2*. She completes safety screening questionnaires and schedules these studies in person and facilitates prior authorizations. The average annual number of MRIs completed from 2020-2024 was 192.75. In just the first 6 months of 2025 there were 270 (40% increase with 6 months remaining in the year).

The BRAIN Initiative simply and effectively eliminated nearly all barriers to completing TCDs, removing all responsibility from parents beyond attending clinic appointments, during which TCD completion is essentially automatic. The revenue generated by increased TCD/MRI volumes is enough to support the salary of the US tech moving forward, making this a sustainable model for dramatically improving TCD and other imaging adherence rates. While the patient volume and payer mix necessary to sustain the model at other centers will vary, the drastic improvement in TCD adherence with minimal effort warrants it being considered as the standard of care delivery model of TCD for SCD.

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2025
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