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Leveraging behavioral economics to implement cascade screening in individuals with familial hypercholesterolemia

Award Number: R33HL161752
ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 03/01/2022
PERIOD OF PERFORMANCE END DATE: 02/28/2027
AWARD TERMINATION DATE: 06/05/2025

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Leveraging behavioral economics to implement cascade screening in individuals with familial hypercholesterolemia - The proposed project leverages our longstanding partnership with the Family Heart Foundation (FHF), a nonprofit research and advocacy organization, to refine and test two promising approaches to implement cascade screening in individuals with familial hypercholesterolemia (FH). Despite evidence-based guidelines for FH diagnosis and treatment, over 1 million Americans with this inherited condition remain undiagnosed. Cascade screening is an evidence-based practice of contacting and screening first-degree biological relatives of FH probands, improves timely FH diagnosis, and reduces morbidity cost-effectively. Cascade screening programs have been successful in other countries where health systems play a key role in notifying relatives, but major implementation challenges limit uptake in the U.S. Pilot projects have identified hurdles including regulatory constraints limiting health system outreach and difficulty contacting family members outside a given health system. In the U.S., cascade screening must involve the proband given regulatory constraints. Applying advances in behavioral economics has great potential to improve implementation of cascade screening via proband-mediated strategies. Led by MPIs with expertise in implementation science (Beidas), behavioral economics (Volpp), and FH (Rader), we have co-designed, and will pilot and test two patient-facing implementation strategies to increase reach of cascade screening with 300 probands from Penn Medicine. Our randomized controlled trial will test (a) a health system-mediated strategy using automated text messages, (b) a Family Heart Foundation-mediated strategy using a navigator, and (c) the “usual care” approach to cascade screening. Both active strategies will be informed by behavioral economics. In the R61 phase, we co-designed health system- and FHF-mediated implementation strategies using behavioral economics in partnership with the FHF and key stakeholders (Aim 1) and are piloting our strategies with 20 FH probands to ascertain feasibility, acceptability, and appropriateness (Aim 2). In the R33 phase, we will conduct a 3-arm hybrid Type 3 effectiveness-implementation RCT, and compare the effect of health system-mediated, FHF-mediated, and usual care approaches on reach (proportion of probands who have at least one family member who completes screening), number of family members screened, number of family members diagnosed with FH, and proband LDL-C levels (Aim 1). We will use mixed methods to identify implementation strategy mechanisms (Aim 2). By testing sustainable and scalable implementation approaches, our study results will be poised to guide future wide-scale implementation of cascade screening for FH and other genetic conditions within and outside large health systems while also answering important questions related to implementation for all populations. Successful strategies can be taken to scale nationally to save lives, in keeping with NHLBI Strategic Objective 6.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $515,597 )
2026	2026	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	5	4/27/2026	NON-COMPETING CONTINUATION	$515,597
														Subtotal = $515,597

Issue Date FY: 2025 ( Subtotal = $555,134 )
2025	2025	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	002	4	8/6/2025	NON-COMPETING CONTINUATION	$555,134
2025	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	3	1/23/2025	NON-COMPETING CONTINUATION	$0
2025	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	001	3	6/5/2025	TERMINATION	$0
														Subtotal = $555,134

Issue Date FY: 2024 ( Subtotal = $614,674 )
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	001	3	6/20/2024	NON-COMPETING CONTINUATION	$44,934
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	002	3	6/22/2024	SUPPLEMENT FOR EXPANSION	$64,217
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	3	3/2/2024	NON-COMPETING CONTINUATION	$505,523
														Subtotal = $614,674

Issue Date FY: 2023 ( Subtotal = $687,087 )
2023	2023	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	2	3/2/2023	EXTENSION WITH OR WITHOUT FUNDS	$593,202
2023	2023	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	002	2	8/22/2023	EXTENSION WITH OR WITHOUT FUNDS	$46,943
2023	2023	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	003	2	8/31/2023	EXTENSION WITH OR WITHOUT FUNDS	$46,942
2023	2023	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	001	2	3/24/2023	EXTENSION WITH OR WITHOUT FUNDS	$0
														Subtotal = $687,087

Grand Total All Awards = $2,372,492

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Leveraging behavioral economics to implement cascade screening in individuals with familial hypercholesterolemia

Award Number: R33HL161752

ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 03/01/2022

PERIOD OF PERFORMANCE END DATE: 02/28/2027

AWARD TERMINATION DATE: 06/05/2025

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