INNV-09. PILOT STUDY OF A SMARTPHONE-BASED SYMPTOM ASSESSMENT (OURBRAINBANK) FOR SUBJECTS WITH GLIOBLASTOMAS

摘要

Self-reports from patients done monthly or every few months in the doctor’s office have several limitations, including poor recall, under- or over-reporting of events, among other biases. We developed a glioblastoma specific app (OurBrainBank) using a platform designed by uMotif, which was previously used in other conditions but has been customized for glioblastoma. All data are sent to a HIPPA compliant database. The subject can view or export their own data as well. 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. Over a 2-month period, since the study was IRB-approved and the app made available free of charge on app stores, there have been 591 individual patients downloads (167 on Android and 424 on iOS). Recruitment has relied heavily on social media and patient run online support groups. We will present the data on compliance, patient characteristics and symptoms tracking at the meeting. At this initial stage, OurBrainBank’s focus is on capturing 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 the database. The goal over the next few years is to create an unprecedented database of high quality and granularity with tens of thousands of de-identified glioblastoma patients, with open-access to qualified academic researchers. In addition, this powerful ‘real world experience’ database will be useful for pharma/biotech companies, and may also facilitate FDA drug approvals for glioblastoma.