Sickle cell disease research

PDF download is not available for Arabic and Urdu languages at this time. Please use the browser print function instead

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 consent for your child to participate.

Key points

  • You and your child 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 and your child understand what the research is about, what is expected of them during the study, the risks and benefits of doing the study and how they can withdraw at any time, even after giving consent.

You and your child 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 for children and teens with sickle cell disease. It can help health-care providers test new treatments, for instance, and help them learn how sickle cell disease impacts the lives of patients and their families.

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

Risks and benefits of taking part in a research study

Sometimes, your child may not directly benefit from taking part in a research study, but they 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 child about the potential risks and benefits of taking part in research. This will allow you to weigh up the good and bad points and decide if you want to take part.

Consent and research

Your child will only be enrolled in a research study if you and/or your child give your consent (sign a form to confirm that you understand the study and are choosing to take part). Depending on your child's age, your child may be able to give their consent on their own, or they may also need you, as their parent, to give consent for them to take part.

It is important for your child to understand their potential role in research, even if you will make the final decision. Ask questions—your health-care team encourages this.

Before giving consent, be sure you and your child understand:

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

Refusing or withdrawing consent

The choice to take part in research is completely up to you and your child. If they do not want to be part of a research study (even if they already gave their consent):

  • their health-care team will respect their decision
  • their treatment from and relationships with their health-care team will not change in any way
Last updated: February 21st 2024