Research to the People
Case Organized By:
Patient Name
Patient Title
Disease Category
Diagnosis
Status
Documentary Film
Vanessa's journey highlights the challenges for cancer patients who need options beyond Standard of Care. In this film, Vanessa's story is interwoven with Research to the People @ Stanford's efforts to generate deeper data, bioinformatics analysis, and translation for her case.
Case Concluded
We worked on Vanessa's case from Fall 2021 through Summer 2022. Analysis for her case was featured in Research to the People @ Stanford's First Annual Symposium. A full retrospective of Vanessa's case will be available through publication.
Introduction
Vanessa is a desmoid tumor patient who’s case remains unresolved. Since she was diagnosed in 2011, Vanessa has been on 9 drugs and/or treatments. Her case is unique because she still lacks a molecular diagnosis for desmoid tumor and has run out of known clinical options. As a public facing patient, Vanessa is making her personal health data open to the scientific community to help create new insights for her case. She documents her medical and spiritual journey on her blog, tiny healer.
Media
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Vanessa writes a blog about her experience at Tiny Healer.
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Vanessa featured on Techtopia with Chitra Ragavan - Ep. 7 - "How a patient with a rare tumor is taking personalized medicine to a new level through a unique non-profit biomedical research initiative."
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Vanessa shares her health approach at Learners designconf: "The Stubborn Patient: Design Your Health Like a Product."
Data
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Medical Records.
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Labs.
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Imaging.
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Whole Genome Sequencing.
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Whole Exome Sequencing
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Transcriptomics.
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Immune Cell Profiling.
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Longitudinal Multi-omics.
