MyThalLog, an app for bluebird bio’s
observational study OF
transfusion dependent beta-thalassemia
Vitaccess is proud to work with bluebird bio on their international observational study of transfusion-dependent beta-thalassemia (TDT).
Transfusion-dependent beta-thalassemia is a rare blood disease that causes severe anaemia requiring frequent blood transfusions. Clinical stage company, bluebird bio, is running an e-diary project over 3 months in 4 countries to measure the impact of the disease on patients’ daily lives.
People in the US, UK, Germany and Italy can download the myThalLog app on their smartphones and record the impact of transfusion-dependent beta-thalassemia on their daily lives, including the number of blood transfusions and their frequency. This is an opportunity to participate in research and help the community to better understand what it’s like to live with transfusion-dependent beta-thalassemia.
The project uses a customised e-diary app called myThalLog, developed using Vitaccess’ MyRealWorld™ BYOD (‘bring your own device’) digital platform, to evaluate the impact of transfusion-dependent beta-thalassemia on patients. The purpose of this project is to collect real-world evidence (RWE) from people living with the condition, which will help us to better understand the significant daily impact on patients with this condition. It will give patients a voice and expand the base of evidence of what it’s like to live with transfusion-dependent beta-thalassemia.
To participate in the study, transfusion-dependent beta-thalassemia patients simply download the myThalLog app onto their smartphone from Android or iOS app stores. myThalLog contains an eDiary that they can then complete at their own convenience. Encrypted data are sent to a cloud-based research portal where they are aggregated and anonymized for analysis in close to real-time.
Please watch this video to see how to download the app:
The app icon will appear on the home screen of your device. Tap on the icon to begin. You should change the initial password you receive to one of your choosing.
PLEASE NOTE This app is not designed for reporting adverse events (AEs). Please report such events to your GP.
Bluebird bio is a clinical-stage company committed to developing gene therapies for severe genetic diseases and T cell-based immunotherapies. Headquartered in Cambridge, Massachusetts, bluebird bio has operations in the US and Europe.
Stay up to date with the app by following us on Facebook and Twitter @myThalLog. For more information about the study and the myThalLog app, please visit our FAQs page or contact us at email@example.com.