Research participants are needed for the following 3 ongoing studies. For more information, please see the contact information below each study.
"FUEL" STUDY - The Fontan Udenafil Exercise Longitudinal Trial (Fontan patients)
Participating in the FUEL Trial may improve the lives of children with single ventricle congenital heart disease. Qualifying participants who are ages 12 to less than 19 will:
- Visit a participating heart center 4 times over 6 months.
- Have two blood draws, an echocardiogram, an exercise
- test and a test to measure how well the blood vessels
- work at the first and last visit (8-9 hours per visit).
- Have blood pressure and heart rate checked the 2nd week
- and 3rd month. These visits can be as short as 30 minutes each.
- Be randomly assigned to take Udenafil or a sugar pill. The pills will look the same
- and neither the study team nor families will know which the participant is receiving.
- In the rare case of medical need, the study team can find out which type of medication is being given.
- Be invited to participate in one-year “Open Label Extension Trial” after the final 6-month FUEL study visit.
- All participants will receive Udenafil during this phase.
- Receive an iPod Touch to keep track of medication and visit schedules, and some reimbursement for time and travel.
CONTACT INFO - FUEL STUDY
Cedars/Sinai Heart Institute, Los Angeles, California
Contact: Ruchira Garg, MD 310-423-1153 or Ruchira.Garg@cshs.org
OR
Rady Children's Hospital, San Diego, California
Contact: Christopher Davis, MD, PhD 858-966-5855 or CDavis@rchsd.org
(Please mention that you were referred by California Heart Connection.)
UCLA Study #1: Memory and Self-Care in Adolescents and Young Adults with Congenital Heart Disease (CHD)
The purpose of the study is gain a better understanding of memory / cognition and other topics that may be related to self-care in adolescents / young adults who have undergone surgery for a heart defect compared to a group without congenital heart disease.
Candidates:
- Ages 14-21 years, with any type of CHD and have undergone surgical repair
- Ages 14-21 years, with NO CHD, no chronic medical or psychiatric conditions (for a healthy control group). Siblings and/or friends are welcome.
Requirements:
- Questionnaire completion on sleep, anxiety, depression, self-efficacy, social support, and self-care (1 hr) and Memory Testing (1 hr), approximately 2 hours total for study completion (most finish in 1 hr and 20 minutes).
Location:
- UCLA School of Nursing OR
- Your home or cardiologist office
Participants of Study #1 will receive a $30 dollar Target gift card upon completion.
UCLA Study #2: Memory and Brain Structure in Adolescents with Single Ventricle Heart Disease
The purpose of the study is gain a better understanding of memory / cognition and the areas of the brain affected in adolescents who have undergone surgery for single ventricle heart disease compared to a group without congenital heart disease.
Candidates:
- Ages 14-18 years, any type of single ventricle heart disease who have undergone Fontan completion
- Ages 14-18 with NO CHD (for healthy control group.) Siblings and friends are welcome.
Requirements:
- Telephone interview to screen for MRI eligibility
- Memory Testing (1 hr) and Brain MRI scan (25 minutes) = approximately 1 ½ hrs for study completion
Location: UCLA 300 Medical Plaza Outpatient MRI Suite
(Tthis study is funded through the National Institute of Health (NIH) R01 grant)
Participants of Study #2 will receive a $200 dollar check upon completion, and a copy of brain MRI scan on a DVD
Please note: Qualified candidates may participate in both UCLA studies, and receive compensation for both ($30 gift card and $200 check.)
CONTACT INFORMATION - UCLA Study
For more information, please contact:
Principal Investigator: Dr. Nancy Pike
phone: 310-903-2614
(Please mention that you were referred by California Heart Connection.)
