Being a teen living with sickle cell disease (SCD) can be challenging - but you’re not alone.

Our research group teamed up with youth to create a new mobile app just for 12-18 year olds living with SCD. iCanCope with SCD is designed to help you cope with pain and other challenges like managing stress and getting ready to switch to adult healthcare.

A large study in Canada and the United States showed that youth with SCD who used the iCanCope app for 2 months felt less pain and had fewer days with pain compared to youth who did not use the app. Almost all (92%) youth wanted to continue using the app.

We are now running a new study to figure out the best ways of getting the iCanCope app used by youth in the community and at SCD clinics across Canada. This website will explain how you can get free access to the app (open to anyone) and find out if you are eligible for the study (open to patients at participating clinics). Explore to find out more!

How iCanCope Helps

Track your pain, sleep, mood, and activity levels.

Set personal goals to improve your function.

Learn new ways to cope with pain and stress.

Practice skills to get ready to switch to adult healthcare.

Connect with other youth living with SCD.

Create and share progress reports to see how you are doing over time.

How to Get the App

The iCanCope with SCD app is publicly available for free to anyone through 2 easy steps. First, download the app onto your mobile device. Second, enter the app access code to create your account.

Step 1. Download the app:

Step 2. Find your access code:

To help us understand where users are coming from (that is, the general public or a SCD clinic), we have a few different access codes available. All of the codes will unlock the same version of the app.

The participating SCD clinics are:

  1. The Hospital for Sick Children (Toronto)

  2. CHEO (Ottawa)

  3. Alberta Children’s Hospital (Calgary)

  4. McMaster Children’s Hospital (Hamilton)

  5. Stollery Children’s Hospital (Edmonton)

  6. BC Children’s Hospital (Vancouver)

  7. Jim Pattison Children’s Hospital (Saskatoon)

  8. IWK Health Centre (Halifax)

Are you currently a patient at one of the listed SCD clinics?

  • You’re eligible for the public stream!

    Your access code is: SCD-PUBLIC

    After downloading the app, click on “don’t have an account yet? Sign up.”

  • Great! Find the code below that matches your clinic.

    After downloading the app, click on “don’t have an account yet? Sign up.” to enter your code.

    1. The Hospital for Sick Children
      Code: SCD-SICKKIDS

    2. CHEO
      Code: SCD-CHEO

    3. Alberta Children’s Hospital
      Code: SCD-ALBERTA

    4. McMaster Children’s Hospital
      Code: SCD-MAC

    5. Stollery Children’s Hospital
      Code: SCD-STOLLERY

    6. BC Children’s Hospital
      Code: SCD-BC

    7. Jim Pattison Children’s Hospital
      Code: SCD-PATTISON

    8. IWK Health Centre
      Code: SCD-IWK

Join the Research Study •

Join the Research Study •

If you are a patient at one of the participating SCD clinics, you may be eligible to join our new iCanCope research study. Benefits of the study include:

  • Earn community service (volunteer) hours;

  • Chance to try out new app features before they are public;

  • Share ideas of how the app can be improved to help other youth living with SCD;

  • Thank you gift card.

Research Evidence

What happened in this study?

  • We talked to youth with SCD to figure out what they needed from a new self-management app.

What were the findings?

  • Many youth with SCD face challenges related to managing pain and stress.

  • They wanted the app to help track their symptoms, learn new ways to cope with pain and stress, and get ready for the switch to adult healthcare.

How can I find out more?
This paper is published in a medical journal called JMIR Pedatrics and Parenting. Read the full study.

What happened in this study?

  • We ran a clinical trial with youth in Canada and the United States who have SCD-related pain.

What did this study find?

  • A group of 111 youth were randomized (like flipping a coin) to use either the iCanCope app or SCD education for 2 months.

  • The iCanCope group reported lower pain scores (1.3 points on a 10-point scale) and less frequent pain (37% fewer days with pain) than the Education group.

  • This is one of the largest digital health trials ever conducted in youth with SCD.

How can I find out more?
This paper is published in a medical journal called PAIN. Read the full study.

What happened in this study?

  • We looked at how youth with SCD engaged with different features of the app. This study was a sub-analysis of the clinical trial.

What did this study find?

  • The most popular app features were Goals and Symptom Trends.

  • Almost all (92%) youth wanted to keep using the app after the study ended.

  • Most youth (83%) would recommend the app to others with SCD.

How can I find out more?
This paper is published in a medical journal called JMIR. Read the full study.

  • "It made me feel like it was made for people my age."

    Youth with SCD, Age 13

  • "It's really just like a peaceful app."

    Youth with SCD, Age 13

  • "I think it made her more aware and more focused and…process…how she can cope with it and mostly like she’s not alone in this… that there are people out there that care. I think it really helped."

    Parent of child with SCD

  • "I just like how there were articles that would kind of help you."

    Youth with SCD, Age 12

  • "If I didn't have a good day and I would mark it down, it would encourage me to try harder to have the positive energy. If I didn't have a good sleep the night before, I would be putting in a [low score], then I would be encouraged to go to sleep earlier. It would just make me feel better."

    Youth with SCD, Age 13

  • "The goal chapter was very helpful because I was able to put what goals I wanted. For example, if I wanted to drink more water or I wanted to get more sleep that week then I was able to do that. That motivated me to want to achieve the goal."

    Youth with SCD

FAQs

  • Yes! While the app was designed for Apple and Android phones, it can also be used on compatible tablets.

  • iCanCope is a research project being led by The Hospital for Sick Children and University Health Network in Toronto, Canada. We are grateful for project funding from the Canadian Institutes of Health Research and the National Institutes of Health to support the sickle cell version of iCanCope.