FlywheelMS: a novel, patient-centred study to better understand multiple sclerosis using electronic health records and other real-world data sources
ECTRIMS Online Library. Williams M. 09/12/19; 279118; P758
Mitzi Williams
Mitzi Williams
Contributions
Abstract

Abstract: P758

Type: Poster Sessions

Abstract Category: Clinical aspects of MS - Natural course

K. Belendiuk1, L. Julian1, M. Martinec2, K. Mace1, R. Gan1, L. Gaetano2, G. Hanson3, T. Astorino3, Y. Pan3, P. Maung3, N. Leviner3, M. Williams4, D. Wormser2

1Genentech, San Francisco, CA, United States, 2F. Hoffmann-La Roche Ltd, Basel, Switzerland, 3PicnicHealth, San Francisco, CA, 4Morehouse School of Medicine, Atlanta, GA, United States

Introduction: Electronic health records (EHRs) are a valuable source of real-world clinical information that have the potential to enhance our understanding of multiple sclerosis (MS) and its progression across a broad patient population.
Aims: FlywheelMS is a novel, patient-centred research study aiming to retrieve complete EHR data across care sites for up to 5000 patients with MS in the US. EHRs will be linked to other patient-level longitudinal data to advance tools to better understand MS. This will form a valuable resource for patients to access their medical records and share them with their healthcare providers (HCPs).
Methods: Consenting adults with self-reported MS, confirmed in EHRs, are being recruited across the US via advocacy groups, social media, conferences, and websites. Medical records produced during routine care are retrieved, digitized and abstracted using machine learning, with HCP review as needed. EHRs are collected retrospectively (as far back as they exist) and prospectively for up to 5 years after enrolment. Brain MRIs are also being collected and principal MRI measures (e.g. lesion volume and count) will be computed. Abstracted EHRs will be linked to other patient-level data, such as digital data from the Floodlight Open app (being developed to measure signs and symptoms of MS), to create a rich data source. Future linked patient-reported outcomes and DNA studies are also planned.
Results: As of February 2019, 570 patients had enrolled in FlywheelMS. At least one record had been abstracted for 506 patients, of whom 407 (80.4%) were women. For abstracted patients, mean (SD) age at enrolment was 49.1 (11.3) years. Up to 38 years (mean, 7.3; SD, 5.9; range, 0-38 years) of historic medical data has been retrieved per patient.
There were 20,471 visits to 7,756 unique HCPs across 2,297 care sites. There were 4,749 neurology visits with 978 unique neurologists.
Raw data from 690 brain MRI sessions have been collected from 205 patients at 274 centres, with a mean of 4.1 (SD, 3.5) MRIs per patient and a frequency of 0.96 MRIs per year.
Conclusions: FlywheelMS will produce a large real-world dataset to better understand MS and standards of care in the US. These data will also support the advancement of MS research and characterise the patient journey.
Disclosure: K Belendiuk: employed by Genentech. Holds stock/options in Roche and Takeda.
L Julian: employed by Genentech.
M Martinec: employed by F. Hoffmann-La Roche Ltd. Shareholder of F. Hoffmann-La Roche Ltd.
K Mace: employed by Genentech.
R Gan: employed by Genentech.
L Gaetano: employed by F. Hoffmann-La Roche Ltd.
G Hanson: employed by PicnicHealth. Has ownership/salary interest in PicnicHealth. Received travel fees from Genentech.
T Astorino: employed by PicnicHealth. Has ownership/salary interest in relation to PicnicHealth.
Y Pan: employed by PicnicHealth. Has ownership/salary interest in relation to PicnicHealth.
P Maung: emplyed by PicnicHealth. Has ownership/salary interest in relation to PicnicHealth.
N Leviner: employed by PicnicHealth. Has ownership/salary interest in relation to PicnicHealth.
M Williams: received consultant/advisory fees from Celgene, Novartis, Biogen, Sanofi-Genzyme and Genentech. Speaker bureau fees from TEVA, Biogen, Sanofi-Genzyme, and Genentech.
D Wormser: employed by F. Hoffmann-La Roche Ltd. Shareholder of F. Hoffmann-La Roche Ltd.

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