The Platform and Governance teams at Sage Bionetworks work across the organization and beyond to support collaborative research. Whether the projects fall under scientific coordination, challenges and benchmarking, or digital health, the Platform and Governance teams are integral to their success. Because we advocate for open-science practices and improving accessibility to resources, many of the technologies, user research expertise, and governance procedures and policies that we have developed are available to the wider scientific community to use.
Tools & Resources
A platform that allows researchers to embed self-administered cognitive tests and other digital assessments into fully remote research studies via a smartphone app.
Synapse is a collaborative, open-source research platform that allows teams to share data, track analyses, and collaborate.
A set of tools and services that allows researchers to collect digital measures of human health from study participants using their own smartphones and other remote sensors.
The ARK Portal hosts data generated by a network of research teams working collaboratively to deepen the understanding of Arthritis and Autoimmune and Related Diseases.
The consortium brings together several multidisciplinary teams to work together to generate large-scale gene expression and regulatory data from human postmortem brains across several major psychiatric disorders and developmental stages.
Access data and tools from a multi-site effort funded by the National Institute of Mental Health to study the role of brain somatic mosaicism in neuropsychiatric disease.
AACR Project GENIE is a publicly accessible international cancer registry of real-world data assembled through data sharing between 19 of the leading cancer centers in the world.
A Digital Health Knowledge Portal to enable the discovery and download of digital and mobile health data, tools, and benchmarked outcomes and digital biomarkers.
The NCI Division of Cancer Biology supports multiple research programs composed of interdisciplinary communities of scientists who aim to integrate approaches, data, and tools to address important questions in basic and translational cancer research.
The AD Knowledge Portal is a platform for accessing data, analyses, and tools that the National Institute on Aging’s Alzheimer’s Disease Translational Research Program generates.
The NF Data Portal is designed to help openly explore and share NF datasets, analysis tools, resources, and publications related to neurofibromatosis.
The goal of developing a framework for cybersecurity informed consent is to help people understand the cybersecurity issues related to medical devices that can be connected to the internet.
Accelerating medical advancements using technologies like artificial intelligence is going to require everyone’s data. How do you regain enough trust in our digital neighborhood to make sharing private health data possible?
Use of E-Consent in Human Subjects Research: This is a recording of a webcast presentation to the Office for Human Research Protections (OHRP) on January 30, 2020, as part of their Lunch and Learn initiative to educate their staff.
What risks exist when companies carry so much consumer data? How can good practice and regulations mitigate these risks? Panelists discuss this during the Future of Health Summit 2019.
The Mobile Health App Developer Workshop took place at the New York Genome Center on Sept. 12, 2019. Sage Bionetworks hosted the workshop. This talk features Meg Doerr, of Sage Bionetworks, on the Elements of Informed Consent.
Learn from Megan Doerr, Principal Scientist, Governance, about Sage Bionetworks’ Elements of Informed Consent toolkit.
The goal of readability analysis is to make copy be understandable by the largest audience possible. This primer on readability can help you get started.
Sage Bionetworks has developed a novel multi-media approach to addressing transparency and comprehension within electronic informed consent (eConsent) for app-mediated research studies.
Digital Health Expertise
To learn more about how can Sage help you with your digital health research goals, visit our Digital Health Expertise page.
DIGITAL HEALTH ASSESSMENTS
To complement the interactive assessments that can be incorporated into a digital health research study, Sage has used the following data collection modalities:
The Digital Jar Open assessment measures the functional range of motion without pain for the joints of the arm (wrist, elbow, shoulder) on each arm while rotating inward and outward.
The Toe Imaging assessment allows a participant to take a photo of the digits of each foot to assess symptoms related to joint swelling and nail dystrophy. Data collected include a jpeg image of each foot.
The Finger Imaging assessment allows a participant to take a photo of the digits of each hand to assess symptoms related to joint swelling and nail dystrophy. Data collected include a jpeg image of each hand.
The Joint Counting assessment allows a participant to select a given set of joints on the body for a binary yes/no as to whether each joint is affected. Data collected include the affected joints and a jpeg image summary.
The Body Area Draw assessment allows a participant to use the touch screen to draw the extent to which an area of the body is affected by a given symptom. Data collected include the calculated percentage of the body surface area and a jpeg image summary.
The Body Area Imaging assessment allows a participant to select an area of the body and use the phone camera to capture an image of this area. Data collected include the location of the body selected and a jpeg image.
The Phonation assessment is an adaption of a clinical test where a participant makes an extended “ahhhhh” sound for 20 seconds. Data collected from this assessment includes an audio recording.
The Heart Rate assessment measures the pulse of a participant using the smartphone camera and flash. The assessment monitors blood flow through the tip of the finger over the course of 20 seconds.
The VO2max, or Heart Rate Recovery assessment is an adaption of the Tecumseh step test that measures VO2Max using the smartphone camera and flash.
The 6-Minute Walk assessment is a direct translation of the 6 minute walk test that measures aerobic capacity and endurance over the course of a 6-minute walk with the phone in a participant’s pocket.
The Tremor assessment is a multi-part activity measuring resting tremor, postural tremor, and kinetic tremor. All activities are performed by each hand separately while holding the phone.
The Walk and Balance assessment is a multi-part activity measuring gait disturbance and motor function similar to a number of traditional assessments: the 25 ft walk, gait analysis, and a stand test.
Mobile Toolbox Cognitive Tests
Memory for Sequences is a working memory assessment that asks participants to recall an alphanumeric string and reorganize/cognitively manipulate it and produce a new output
Dimensional Change Card Sort (DCCS) tests executive function by asking participants to tap on one of the two pictures presented in response to either the SHAPE or COLOR prompt as fast as possible.
PSM asks participants to drag the picture/item in the correct order of the sequence to assess episodic memory.
Number match is an episodic memory assessment. Participants fill in items, one row at a time, according to a code/legend on the top of the screen.
Indicate the direction of a central arrow flanked by foils on each side presented in the same (congruent) and opposite (incongruent) orientations.