Sickle cell disease research

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Research can help health-care providers test new treatments and help them learn how sickle cell disease affects patients and their families. Learn about the risks and benefits of participating in research and about giving your consent to participate.

Key points

  • You may be asked to take part in research to help improve the lives of patients with sickle cell disease.
  • Some research involves clinical trials of treatment and others involve answering questions or taking part in a new program for patients and families.
  • Before consenting to research, make sure you understand what the research is about, what is expected of you during the study, the risks and benefits of doing the study and how you can withdraw at any time, even after giving your consent.

You may have been asked to take part in research, or you might already be involved in a research study. Research is an important part of improving the care of teens with sickle cell disease. It can help doctors test new treatments, for instance, and help them learn how sickle cell disease impacts the lives of patients and their families.

In general, when you are part of a study, any information you provide is anonymous. This means that your name, or any other information that could tell people exactly who you are, will not be included in any research data or reports.

Risks and benefits of taking part in a research study

Sometimes, you may not directly benefit from taking part in a research study, but you will be contributing to new knowledge that helps other young people with sickle cell disease in the future.

Your health-care provider or the researcher on the study will talk to you and your parent(s)/caregiver(s) about the potential risks and benefits of taking part in the research. This will allow you to weigh the good and bad points and decide if you want to take part.

Consent and research

You will only be enrolled in a research study if you give your consent (sign a form to confirm that you understand the study and are choosing to take part). Depending on your age, a parent or caregiver may also need to give consent for you to take part.

It is important for you to understand your potential role in research, even if you rely on your parent(s)/caregiver(s) to make the final decision. Ask questions—your health-care team encourages this.

Before giving consent, be sure you understand:

  • why the research study is being done
  • what the researchers expect of you
  • the potential risks and benefits involved in the study
  • your right to withdraw from, or quit, a study at any time, even if you already gave consent

Refusing or withdrawing consent

The choice to take part in research is completely up to you and your parents/caregivers. If you do not want to be part of a research study (even if you previously gave your consent):

  • your health-care team will respect your decision
  • your treatment from and relationships with your health-care team will not change in any way
Last updated: November 6th 2023