# wombat urls ß PLOS ONE: Defining Natural History: Assessment of the Ability of College Students to Aid in Characterizing Clinical Progression of Niemann-Pick Disease, Type C
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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

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  • 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

    X
  • 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

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  • 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

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  • 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

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  • 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

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  • Evan James,

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

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  • Lindsey Jones,

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

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  • Mary Kearns,

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

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  • 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

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  • 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

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  • Kevin Moser,

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

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  • 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

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  • Marie Pereira,

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

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  • 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

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  • Bryce Ramos,

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

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  • Teresa Raya,

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

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  • Stephen Riney,

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

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  • Geoff Roberts,

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

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  • Mark Robertshaw,

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

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  • Frannie Rudolf,

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

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  • Samuel Rund,

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

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  • Stephanie Sansone,

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

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  • Lindsay Schwartz,

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

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  • Ryan Shay,

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

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  • 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

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  • Catherine Tan,

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

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  • Marisa Truong,

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

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  • Mairaj Uddin,

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

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  • Jennifer VanTrieste,

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

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  • 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

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

About the Authors

Jenny Shin, Katrina Epperson, Kasturi Haldar
Center for Rare and Neglected Diseases, University of Notre Dame, Notre Dame, Indiana, United States of America
Nicole M. Yanjanin, Forbes D. Porter
Program in Developmental Endocrinology and Genetics, NICHD, National Institutes of Health, DHHS, Bethesda, Maryland, United States of America
Jennifer Albus, Laura Borgenheimer, Natalie Bott, Erin Brennan, Daniel Castellanos, Melissa Cheng, Michael Clark, Margaret Devany, Courtney Ensslin, Nina Farivari, Shanik Fernando, Lauren Gabriel, Rani Gallardo, Moriah Castleman, Olimpia Gutierrez, Allison Herschel, Sarah Hodge, Anne Horst, Mary Howard, Evan James, Lindsey Jones, Mary Kearns, Mary Kelly, Christine Kim, Kinzie Kiser, Gregory Klazura, Chris Knoedler, Emily Kolbus, Lauren Lange, Joan Lee, Eileena Li, Wei Lu, Andrew Luttrell, Emily Ly, Katherine McKeough, Brianna McSorley, Catherine Miller, Sean Mitchell, Abbey Moon, Kevin Moser, Shane O'Brien, Paula Olivieri, Aaron Patzwahl, Marie Pereira, Craig Pymento, Erin Ramelb, Bryce Ramos, Teresa Raya, Stephen Riney, Geoff Roberts, Mark Robertshaw, Frannie Rudolf, Samuel Rund, Stephanie Sansone, Lindsay Schwartz, Ryan Shay, Edwin Siu, Timothy Spear, Catherine Tan, Marisa Truong, Mairaj Uddin, Jennifer VanTrieste, Omar Veloz, Elizabeth White
NPC Consortium for Community-Based Assessment of Patient Records, Cape Town, South Africa

Corresponding Author

Email: khaldar@nd.edu

Competing Interests

The authors have declared that no competing interests exist.

Author Contributions

Conceived and designed the experiments: KH FDP JS KE NY. Performed the experiments: JS KE NY JA LB NB EB DC M. Castleman M. Cheng M. Clark LD CE NF SF LG RG OG WH A. Herschel SH A. Horst MH EJ LJ M. Kearns M. Kelly C. Kim KK GK C. Knoedler EK LL JL E. Li WL AL E. Ly K. McKeough BM CM SM AM K. Moser SO PO AP MP CP ER BR TR GR MR FR S. Riney S. Rund SS LS RS ES TS CDT MT MU JV OV EW FDP KH. Analyzed the data: JS KE NY JA LB NB EB DC M. Castleman M. Cheng M. Clark LD CE NF SF LG RG OG WH A. Herschel SH A. Horst MH EJ LJ M. Kearns M. Kelly C. Kim KK GK C. Knoedler EK LL JL E. Li WL AL E. Ly K. McKeough BM CM SM AM K. Moser SO PO AP MP CP ER BR TR GR MR FR S. Riney S. Rund SS LS RS ES TS CDT MT MU JV OV EW FDP KH. Contributed reagents/materials/analysis tools: KH FDP JS KE NY. Wrote the paper: KH FDP JS KE NY.