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Fontan Follow-up Links: Healthcare Providers Contact PHN Sites Brochures
If you
are the parent of a child who was enrolled in the Fontan Cross-Sectional
(Fontan 1) Study and your child is less than 18 years of age,
the word "you" refers to your child or adolescent
who will be asked to participate in this study.
Fontan Follow-up Study Basics
You were enrolled
in the Fontan Cross-Sectional Study or Fontan 1 Study that looked
at how children and adolescents with single ventricle heart
defects were doing after their Fontan
Surgery
You can be in
the study if you were enrolled in the Fontan 1 study.
The study will
be explained to you in detail by one of the study
investigators This is what needs to be done in the study:
This study does not involve any study-related visits. Study personnel will be in contact with you during the time you are in the study. You are free to call the nurse or study coordinator at any time with any questions or concerns that you may have.
After you enroll and complete the questionnaires, we will continue to review your medical records and may also contact you once a year, by a brief telephone call or letter, for up to 10 years to see how you are doing. In addition, study personnel will keep you informed about other possible follow-up studies. However, you are not committed to entering any other studies.
The questionnaires will provide information about how you act and function, which might not otherwise be known. If problems are found, early help can be suggested. You may not benefit
directly from being in this study, but the information we
learn from this study may help improve the care of other children
and young adults who have also been born with a heart defect.
You may find it inconvenient to complete the questionnaires or to talk with the study nurses by telephone. We will make sure that you will have plenty of time to fill out the questionnaires. You do not have to answer any questions that make you feel uneasy. Study nurses will be willing to answer questions or provide support as you complete the questionnaires.
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