If you have TDT (Transfusion-Dependent Beta-Thalassemia), please download the MyThalLog app on your smartphones and start recording the impact of the disease on your daily life, including managing the disease (e.g. time spent receiving blood transfusions) and impact on your quality of life. This is an opportunity to participate in research and help the community better understand what it’s like to live with TDT.
bluebird bio is sponsoring this e-diary project that will last three months. This app is not meant for adverse events (AEs) reporting. Please report such events to your physician.
Compensation for participation: You will receive and accrue points (hereafter referred to as “stars”) for completing these surveys, which you can exchange for Amazon digital vouchers. You will need to provide an email address for a valid Amazon account in order to receive the digital vouchers. Maximum compensation (one time within study), corresponding to a complete data set – i.e. no missing data – is $450 US dollars per participant (with currency conversion rates automated by Amazon). In-app stars can be redeemed for Amazon vouchers when thresholds are reached, equating to completion of responses for a week, or you can choose to wait until the end of the study before redeeming all of your stars’ value at once. You are eligible for compensation of $10 USD (or local currency equivalent) for each participant you refer, who successfully enrols in the study, up to a maximum of five participants. The participant who is referred is also eligible for $5 USD (or local currency equivalent). When thresholds are reached, referral tokens may be redeemed as Amazon digital vouchers and allocation of these will be made contingent on Amazon’s payment processes and turnaround times and may differ slightly per country and currency conversion.