How this sickle cell disease library is organized

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Welcome! This website is for parents of teens aged 12 to 18 years and is designed to help you learn more about your teen's sickle cell disease.

The web library includes six lessons that provide information on a range of topics related to sickle cell disease. We recommend that you read one lesson a week, at your own pace. You can also look up the lessons whenever you want to get information on a topic that interests you.


  1. Introduction
  2. Sickle cell disease: Inside and out
  3. Treatments and medications
  4. All about pain
  5. Healthy lifestyle choices
  6. Looking ahead

The lessons offer helpful information, but they do not replace your teen's healthcare team. Because the healthcare team know your teen's medical history, they are still the best people to answer any questions about your teen's specific medical needs.

About the sickle cell library website

The website was developed at The Hospital for Sick Children (Toronto), Seattle Children’s Hospital, Children’s Healthcare of Atlanta, and Connecticut Children’s Hospital.

The website team includes researchers, doctors and other healthcare professionals, and young people with sickle cell disease and/or chronic pain from across Canada and the United States. Visit the project contributors’ page to learn more about the many people who were involved in creating this website.

Role of research co-ordinator

Your research co-ordinator is an important part of the study team. They will be your key point of contact for completing the study questionnaires and can help you if you have any technical problems when using the website.

You can find the research co-ordinator’s contact information on the consent form you signed when you joined the study or on the co-ordinator’s business card, if they gave you one.

Last updated: August 10th 2017