Penn Family Screening for Familial Hypercholesterolemia (NHLBI-R33)
Familial Hypercholesterolemia
About this trial
This is an interventional health services research trial for Familial Hypercholesterolemia focused on measuring implementation science, behavioral economics, equity, cascade screening
Eligibility Criteria
Inclusion Criteria (probands): Adults aged 18 years and older with clinically diagnosed FH who are treated within the Penn Medicine system Have contact information for at least one living, first-degree biological relative Have a cell phone with texting capabilities and/or access to email Exclusion Criteria (probands): People under age 18 Do not have contact information for at least one living, first-degree biological relative Do not have a cell phone with texting capabilities nor access to email
Sites / Locations
- University of Pennsylvania, Perelman School of Medicine
Arms of the Study
Arm 1
Arm 2
Arm 3
Experimental
Experimental
No Intervention
Penn Medicine (health system)-mediated
Family Heart Foundation-mediated
Usual Care
Probands receive automated text messages and/or emails through the Way to Health (WTH) platform containing information about FH and cascade screening from Penn Medicine, and a request to identify first-degree biological relatives. Probands choose whether to contact relatives themselves or share contact information so that automated text messages and/or emails can be sent by Penn Medicine to relatives directly via WTH. If probands opt to contact relatives themselves (self-contact), they receive tips on how to do this effectively. If probands opt for Penn Medicine to contact their relatives (direct contact), relatives receive information via WTH about FH and instructions for screening. All relatives (regardless of whether they were contacted via self-contact and direct contact) will be offered FH screening at no cost. If a proband's initial choice of outreach is not successful, they will have the option of initiating the alternate outreach approach (direct or self-contact).
After using WTH to conduct an identity screen and giving probands an option to opt-out of having their information shared with Family Heart Foundation (FHF), FHF reaches out directly to probands via an FHF-employed navigator. During an initial call, the navigator introduces the proband to navigation services, conducts a social history, and initiates a plan for contacting relatives. Probands choose whether to contact relatives themselves (self-contact) or have FHF contact relatives directly (direct contact). Those who choose self-contact receive personalized coaching to address barriers and concerns. For direct contact relatives, FHF will call these relatives directly. All relatives (regardless of whether they were contacted via self-contact and direct contact) will be offered FH screening at no cost. If a proband's initial choice of outreach is not successful, they will have the option of initiating the alternate outreach approach (direct or self-contact).
Probands randomized to this arm will not receive any contact from the research team or Family Heart Foundation regarding cascade screening (i.e., no intervention).