Characterization and utilization of an international neurofibromatosis web-based, patient–entered registry: An observational study

• Mindell Seidlin ,

  Contributed equally to this work with: Mindell Seidlin, Robert Holzman, Pamela Knight, Annette Bakker

  Affiliation Children’s Tumor Foundation, New York, United States of America

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• Robert Holzman ,

  Contributed equally to this work with: Mindell Seidlin, Robert Holzman, Pamela Knight, Annette Bakker

  Affiliation Department of Medicine, New York University School of Medicine, New York, United States of America

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• Pamela Knight ,

  Contributed equally to this work with: Mindell Seidlin, Robert Holzman, Pamela Knight, Annette Bakker

  * E-mail: pknight@ctf.org

  Affiliation Children’s Tumor Foundation, New York, United States of America

  http://orcid.org/0000-0002-1551-7550

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• Bruce Korf ,

  ¶‡ These authors also contributed equally to this work.

  Affiliation Department of Genetics, University of Alabama at Birmingham, Birmingham, Alabama, United States of America

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• Vanessa Rangel Miller ,

  ¶‡ These authors also contributed equally to this work.

  Affiliation Invitae, San Francisco, California, United States of America

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• David Viskochil ,

  ¶‡ These authors also contributed equally to this work.

  Affiliation Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah, United States of America

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• Annette Bakker ,

  Contributed equally to this work with: Mindell Seidlin, Robert Holzman, Pamela Knight, Annette Bakker

  Affiliation Children’s Tumor Foundation, New York, United States of America

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• on behalf of the Children’s Tumor Foundation

  ¶Contributors to the development of the NF Registry are listed in the Acknowledgements.

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