NCI Data Jamboree (Project Abstract Submission): Submission #25

serial: '25'
sid: '188689'
uuid: a5dce2d6-869e-4949-a2a0-30a11d523def
uri: /nci/datajamboree/abstractsubmission
created: '1784815629'
completed: '1784815629'
changed: '1784815629'
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data:
  list_of_additional_authors:
    - add_author_letters: ''
      affiliation: NCI
      first_name: Raisha
      last_name: Campisi
  category: 'Enhancing data interoperability (e.g., data harmonization, data federation)'
  degree_s_: MSc
  email: raisha.campisi-cadme@nih.gov
  first_name: Raisha
  keywords_abstracts: 'Young-Onset Head and Neck Cancer, Fanconi Anemia, Public Data Resource Scaffold'
  last_name: Campisi
  middle_initial: L
  organization: CGB/DCEG/NCI/NIH
  organization_address:
    address: ''
    address_2: ''
    city: Rockville
    country: ''
    postal_code: ''
    state_province: ''
  summary: |-
    This project’s goal is to build a practical, reusable framework for identifying and comparing public data resources relevant to young-onset head and neck squamous cell carcinoma (HNSCC), with a particular focus on Fanconi Anemia (FA), an inherited syndrome that increases early-onset squamous cell carcinoma risk. Because public cancer datasets are fragmented and no single resource contains all the necessary information for FA-specific HNSCC incidence estimates, this effort aims to bridge data gaps and clarify what current resources can support.
    The key objectives of the project are: 
    - Identify public and controlled-access data repositories with information about young adults diagnosed with HNSCC
    - Determine which resources provide essential variables to define a young-onset HNSCC cohort—such as age at diagnosis, tumor site, histology, stage, HPV status, follow-up, and survival
    - Locate datasets that capture genomic or inherited predisposition information, including FA-related genes or DNA repair pathway variants
    - Clarify the limitations and gaps that remain before these resources can fully support FA-specific prospective incidence research.

    To achieve these aims, the project will systematically analyze cancer registry and surveillance datasets (like SEER), clinical and genomic resources (such as NCI Genomic Data Commons/TCGA-HNSC and cBioPortal), phenotype/genotype metadata, and variant annotation tools (including ClinVar). Controlled-access repositories such as dbGaP, Kids First, and All of Us will be evaluated for their inclusion of relevant clinical, genomic, and demographic variables.

    The deliverables from a focused 3-day sprint will include: 
    - An inventory spreadsheet cataloging candidate repository and their relevance; a variable crosswalk comparing the availability of key data fields
    - A reproducible notebook or documented workflow demonstrating cohort identification and annotation
    - A gap memo outlining which research questions can be answered with current public data and which require linking to FA-specific registries, natural history studies, or controlled-access cohorts.
  title: 'Clinical Research Coordinator'
  ttile: 'Building a Public Data Resource Scaffold for Young-Onset Head and Neck Cancer and Fanconi Anemia-Associated Cancer Risk'