Accessible Healthcare Model for Congenital Heart Disease

Overseen By Catherine Allen, MD

Age: < 65

Sex: Any

Trial Phase: Academic

Sponsor: University of Wisconsin, Madison

Disqualifiers: Provider discretion

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 1

450 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

The study includes patients with congenital heart disease (CHD), as well as their support persons and their providers, who are preparing to make the transition from pediatric to adult care for their CHD. The purpose of this study is to improve the tools available to help find doctors as patients enter adulthood. 200 people with CHD and support people will be enrolled.

Who Is on the Research Team?

Catherine Allen, MD

Principal Investigator

UW School of Medicine and Public Health

Are You a Good Fit for This Trial?

Inclusion Criteria

I am able to agree to take part in the study when asked by my heart doctor.

I have a disability or am identified as having one in my records.

I have congenital heart disease and am between 12 and 26 years old.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

On-Study Procedures

Participants will be asked their preference for contact for relevant follow-up and may receive a copy of the QPL and aTRA prior to their clinic visit. Accessible care activities will be performed by the provider following the patient participants' enrollment in the study.

1 month

1 clinic visit

Adaptive Transition Education Procedures

Recruitment interviews and adaptive transition education activities will take place. Participating patients and their support persons may complete structured or unstructured interviews following the education session.

1 month

Follow-up

Participants are monitored for safety and effectiveness after the transition education procedures. Surveys and interviews are conducted to assess transition factors.

up to 1 year

What Are the Treatments Tested in This Trial?

How Is the Trial Designed?

Group I: Patients Experimental Treatment 5 Interventions

Diagnosed CHD patients between the ages of 12-26 years.

Group II: Patient Support People Experimental Treatment 3 Interventions

Group III: Patient Health Care Providers Experimental Treatment 2 Interventions

Who Is Running the Clinical Trial?

University of Wisconsin, Madison

Lead Sponsor

Trials

1,249

Recruited

3,255,000+