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Research Article

Defining Natural History: Assessment of the Ability of College Students to Aid in Characterizing Clinical Progression of Niemann-Pick Disease, Type C

  • Jenny Shin equal contributor,

    equal contributor Contributed equally to this work with: Jenny Shin, Katrina Epperson

    Affiliation: Center for Rare and Neglected Diseases, University of Notre Dame, Notre Dame, Indiana, United States of America

    X
  • Katrina Epperson equal contributor,

    equal contributor Contributed equally to this work with: Jenny Shin, Katrina Epperson

    Affiliation: Center for Rare and Neglected Diseases, University of Notre Dame, Notre Dame, Indiana, United States of America

    X
  • Nicole M. Yanjanin,

    Affiliation: Program in Developmental Endocrinology and Genetics, NICHD, National Institutes of Health, DHHS, Bethesda, Maryland, United States of America

    X
  • Jennifer Albus,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Laura Borgenheimer,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Natalie Bott,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Erin Brennan,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Daniel Castellanos,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Melissa Cheng,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Michael Clark,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Margaret Devany,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Courtney Ensslin,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Nina Farivari,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Shanik Fernando,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Lauren Gabriel,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Rani Gallardo,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Moriah Castleman,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Olimpia Gutierrez,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Allison Herschel,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Sarah Hodge,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Anne Horst,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Mary Howard,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Evan James,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Lindsey Jones,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Mary Kearns,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Mary Kelly,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Christine Kim,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Kinzie Kiser,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Gregory Klazura,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Chris Knoedler,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Emily Kolbus,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Lauren Lange,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Joan Lee,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Eileena Li,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Wei Lu,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Andrew Luttrell,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Emily Ly,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Katherine McKeough,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Brianna McSorley,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Catherine Miller,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Sean Mitchell,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Abbey Moon,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Kevin Moser,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Shane O'Brien,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Paula Olivieri,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Aaron Patzwahl,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Marie Pereira,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Craig Pymento,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Erin Ramelb,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Bryce Ramos,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Teresa Raya,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Stephen Riney,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Geoff Roberts,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Mark Robertshaw,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Frannie Rudolf,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Samuel Rund,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Stephanie Sansone,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Lindsay Schwartz,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Ryan Shay,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Edwin Siu,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Timothy Spear,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Catherine Tan,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Marisa Truong,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Mairaj Uddin,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Jennifer VanTrieste,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

    X
  • Omar Veloz,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Elizabeth White,

    Affiliation: NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

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  • Forbes D. Porter,

    Affiliation: Program in Developmental Endocrinology and Genetics, NICHD, National Institutes of Health, DHHS, Bethesda, Maryland, United States of America

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  • Kasturi Haldar mail

    khaldar@nd.edu

    Affiliation: Center for Rare and Neglected Diseases, University of Notre Dame, Notre Dame, Indiana, United States of America

    X
  • Published: October 03, 2011
  • DOI: 10.1371/journal.pone.0023666

Reader Comments (9)

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Beneficial Undergraduate Experience

Posted by bmcsorley on 12 Oct 2011 at 03:54 GMT

Taking part in this natural history study has not only been a great experience, but it has also prepared me for my future as a physician. This class offered me the opportunity to become aware of rare diseases, such as NPC. It is rare for an undergraduate student to be exposed in detail about a rare disease. Because of this truth, it is critical that this class be expanded to other universities. Rare disease communities need as much awareness and research as they can get, and expanding knowledge about rare diseases to other undergraduates is a great way of doing that.

Furthermore, we were privileged to become familiar with medical records, which will definitely aid my work as a physician. Also, the awareness of NP-C has sparked my interest to become an advocate for people who suffer from rare diseases. I am privileged to be currently taking an expansion course of this class, which will further help my advocating for rare disease families. I look forward to using my knowledge from these courses to make a difference in the rare disease community and become a more caring and aware physician.

No competing interests declared.