scdtdp assent_revised.

Sickle Cell Disease Treatment Demonstration Program

(DELETE THIS AND ALL OTHER INSTRUCTIONS IN ITALICS)

Name of Youth: ______________________________________

Name of Parent/Legal Guardian: _____________________________________

My name is ______________________ and I work for a company called insert name of clinic or FQHC. We are talking to youths about Sickle Cell Disease. The questions are about your health and the health care that you receive from doctors and others (If applicable: Some of the questions may make you feel sad or uncomfortable).

______________________________ has given permission for you to talk with me about these things. If it is okay with you, I would like to ask you some questions.

You can decide not to participate even if your parents have said it is ok.. You can refuse to answer any question. (If applicable: If you do not want to do this it will not affect the health care your receive.Your refusal would not affect any benefits . that you may receive.) You also have the right to stop the interview at any time

Anything you tell me is private. No one outside of the research team, including your parents, will know your answers. There is one exception: If I learn during our talk that your life or health is in danger, I will tell someone whose job it is to see that you are safe and protected.

Our talk today will last no longer than 30 minutes. You will be given a copy of this consent form to keep.

(If applicable: We may have to ask you some more questions in the future).

May I ask you the questions?

• Child agrees

• Child does not agree

• Child did not appear to understand explanation

________________________________________________________________

__________________________ _____________________________ ­­­­­­­­_______________

Signature/Mark of Child Signature of Interviewer Date

2

RTI IRB Number_______________

RTI IRB Approval Date_______________

Consent Form Version Date_________________