TABLE 1.

Some suggestions for future needs in pediatric FH

Basic Science	Population Science	Life Course	Clinical Research	Patient-Centric Research	Model of Care
Interaction of main FH gene effects and modifier genes.	Risk-benefit and cost effectiveness of universal screening of children with reverse cascade testing, compared with cascade (forward) screening methods.	Natural history of atherosclerosis in relation to timing and intensity of intervention to lower LDL cholesterol.	Trials of new pharmacological agents and nutraceuticals.	Assessment of community perceptions of FH screening strategies.	Optimal processes and pathways for organization of screening and follow-up.
Create a FH genetic biobank with long-term goal of linkage of registry to biobank.	Use of registries to understand natural history and impact of treatments.	Risk-benefit of lifelong FH care, including assessment of treatment goals and long term side effects of treatment.	Role of imaging for assessing of atherosclerosis.	Assessment of patient and family perceptions of different aspects of care.	Optimal pathways for transitional care.
Influence of genotype on response to cholesterol-lowering medications.	Country-specific LDL cholesterol and apoB cut-off levels to diagnose FH.	Better understanding of the impact of pregnancy on natural history of FH in mothers and offspring.	Long-term safety of statins and other cholesterol lowering therapies.	Role of decision aids (i.e., tools to help children and adolescents think through screening and treatment decisions).	Integration of centralized FH services with primary care.
Impact of maternal hypercholesterolemia on programming arterial biology of fetus.	Long-term outcomes of children with pathogenic gene variants with normal LDL cholesterol.	Outcomes of liver transplantation on children with severe hoFH.	Effectiveness of culturally diverse heart-healthy diets	Most effective tools for education and support (e.g., social media).	Effectiveness of family based FH clinics compared with separate adult and pediatric clinics.
Discovery of new monogenic causes of FH phenotype.			Biomarkers of arterial health in children.	Psychological impact of diagnosis of FH.	Role of allied health personnel (e.g., pharmacist, nurse) and peer mentors with FH.
			Methods for enhancing shared decision making with families.	Enhancing literacy and understanding of FH.	Collaboration with patient support groups and networks.

For more suggestions and context see text. Adapted from Gidding et al. (8).