Background: Self-reports from patients done monthly or every few months in the doctor’s office have several limitations, including poor recall, underreporting or overreporting of events, among other biases.
Methods: We developed a glioblastoma-specific app (OurBrainBank) using a platform designed by uMotif that was previously used in other conditions but has been customized for glioblastoma. All data are sent to a HIPAA- compliant database. The subject can view or export their own data as well and create data reports to their medical team. Inclusion criteria included age 18 years or older, diagnosis of glioblastoma, English-speaking subject, and availability of a smartphone or tablet. After electronic informed consent, patients completed baseline questionnaires about their treatment and validated surveys (EORTC-QLQ, EORTC-BN20). Certain parameters, such as sleep quality, exercise, mood, and fatigue, were captured for all patients. In addition, patients picked 6 additional symptoms most relevant to their clinical condition.
Results: Since the study was IRB-approved and the app made available free of charge on app stores, there have been 615 individual patients who registered on this app. In addition, we launched in the United Kingdom in December 2019, and 45 patients have been accrued there. Recruitment has relied heavily on social media and patient-run online support groups. The most commonly tracked symptoms were exercise, fatigue, mood, sleep quality, appetite, memory, and concentration. Patients were alerted to capture symptoms at least weekly, and more than 13,000 data points were captured. Most patients found symptom tracking useful (average rating of 7 on 0-10 scale).
Conclusion: At this stage, OurBrainBank has shown that it can efficiently collect glioblastoma patients’ symptoms. In the next steps, we plan to collect passive data from smartphones and other device trackers. Additionally, OurBrainBank will enable patients to donate their medical records to a national and international database.
Objectives: The goal over the next few years is to create an unprecedented database of high quality and granularity with tens of thousands of deidentified glioblastoma patients, with open access to qualified academic researchers. In addition, this powerful “real-world experience” database will be useful for pharma/biotech companies.
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