Trial Information

Summary: Comprehensive Sickle Cell Centers Collaborative Data Projects

What is the purpose of this study?
The goals of this study are:

• To gather medical information about a large number of patients with sickle cell disease over a period of time
• To plan and identify patients for future studies so that researchers can learn more about the disease
• To gather information about how sickle cell disease affects quality of life
• To evaluate the relationship between patient characteristics and clinical events

Who will be included in this study?
Patients of any age who have been diagnosed with sickle cell disease may be eligible to participate in this study.

What is involved?
Patients may be in this study for up to 5 years.

Patients will need to have the following exams, tests, or procedures during the study. If patients have had some of the tests recently, they may not need to be repeated. This will be up to the study doctor.

• A medical history
• Two questionnaires

What are the benefits?
There are no direct benefits for patients who agree to take part in this study. Information learned from this study may help patients with sickle cell in the future.

Will I get all the facts about the study?
Parents interested in having their child participate will be scheduled with a physician who will thoroughly explain all of the details of the study. The physician will review the consent form with the parent/patient and will be sure that all questions are answered. The consent form goes over all of the procedures, the risks, the benefits, the compensation, who to contact with questions or concerns and more. Study procedures will not begin until a parent/guardian has signed this form and, if of age, the child has given at minimum his/her verbal agreement.

What are the risks?
A detailed list of risks will be provided to those patients interested in knowing more about the study.

If you would like to learn more about participating in this study, please send an e-mail message using the form below.