WELCOME
Dear READYorNotTM CHD Team Members,
Great news! After more than 2 years of creating the content of the app, pivoting to a new industry partner, and navigating COVID, the clinical trial has finally launched and is actively enrolling participants!
I hope this brief newsletter will bring you up to speed. As always, if you have questions or suggestions, please reach out to me or any other team members.
Regards,
Andrew
The RCT
The READYorNotTM CHD Trial (NCT04463446) started recruitment in Edmonton in January 2022 and enrollment has been expanded to 3 out of 4 recruitment sites to date. In total, we have enrolled 12 participants out of an anticipated 200-person sample size.
Recruitment Contest
Now that recruitment has started, we’re excited to kick off a friendly recruitment contest! From June 15 to December 15, 2022, we will be keeping track of how many participants each site enrolls. Whichever site enrolls the highest number of participants in this 6-month period will win a Starbucks gift card for each team member, and of course, bragging rights. :)
The CHD App
As you know, over the past several months, the team has finalized the changes needed to the pre-existing Brain-Based Disabilities app from both a content and technical perspective to translate it into the CHD App.
We are glad to announce the MyREADY TransitionTM CHD App is ready and in production in two languages (English and French) for trial participants to use. The app can be found on the official stores:
App Store (for iPhone and iPad) – Version 1.0.9
Last updated February 18, 2022
Google Play Store (for Android phones or tablets) – Version 1.0
Last updated on February 16, 2022
About the App: The MyREADY Transition CHD App for adolescents with Congenital Heart Disease (CHD) is designed to educate and empower youth as they prepare for transition from pediatric to adult care.
This version is intended for participants to the READYorNotTM CHD Trial (NCT04463446) who will require an access code from the Clinical Research team. Participants of the study are between 16 and 17 years of age and have CHD.
If you are a member of the study team and are interested in trying the App, please contact Alicia or Daniella to receive an access code.
Acknowledgements:
Our special thanks to Rocio Gutierrez Rojas, from the CHUM Ste. Justine team, for helping with the review and edits to the French version. It was quite a time-consuming contribution that will benefit the francophone population.
Also, we are grateful to Youth Advisory Council members Athulya, Alyssa and Jaycee who dedicated their time and passion to record video testimonials for the App. Their videos are key to the content and were filmed remotely (with a home background) providing a natural and fresh viewpoint.
Youth Advisory Council (YAC)
The YAC will be meeting again in July 2022 to consult with the study team under the guidance of Brooke Allemang, PhD Candidate in the Faculty of Social Work at the University of Calgary. They will be discussing ongoing participant engagement with the study and with the app itself. YAC members will be compensated $25/hr of meeting time. Thank-you to our YAC members for their ongoing contributions to the study!
Updated READYorNot CHD Timeline:
Primary Investigators: Drs. Ariane Marelli,
Andrew Mackie and Adrienne Kovacs.
Team collaborators: Alicia Via-Dufresne Ley,
Daniella San Martin-Feeney
Dr. Ariane Marelli, McGill University Health Centre
Dr. Andrew Mackie, University of Alberta
Dr. James Brophy, McGill University
Dr. Gina Dimitropoulos, University of Calgary
Dr. Anne Fournier, Ste. Justine Hospital, Univ. de Montreal
Dr. Kevin Harris, B.C. Children’s Hospital, UBC
Mr. Symon Hay, Westcoast Connection
Dr. Scott Klarenbach, University of Alberta
Dr. Brian McCrindle, SickKids, University of Toronto
Dr. Conall Morgan, SickKids, University of Toronto
Dr. Roberta Woodgate, University of Manitoba
Dr. Maryna Yaskina, Women and Children’s Health
Research Institute, U of A
Dr. Jennifer Zwicker, University of Calgary
CONTACT US
daniella.sanmartinfeeney@ahs.ca
alicia.via-dufresneley@mail.mcgill.ca