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• W2947415026 abstract "e13574 Background: 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. Methods: 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 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 305 individual patients who registered on this app. 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 5,000 datapoints were captured. The median age was 48 (18-83). 53% of patients had received the GBM diagnosis < 1 year and 25% between 1-2 years. Most patients found symptom tracking useful (average rating of 7 in 0-10 scale). Conclusions: At this initial 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. 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." @default.
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• W2947415026 date "2019-05-20" @default.
• W2947415026 modified "2023-09-23" @default.
• W2947415026 title "Study of a smartphone-based symptom assessment (OurBrainBank) for subjects with glioblastomas." @default.
• W2947415026 doi "https://doi.org/10.1200/jco.2019.37.15_suppl.e13574" @default.
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