Annual Meeting of the NCI Cohort Consortium (Abstract Submission): Submission #8

Lightning Talks Abstract
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Presenter's First Name: : Isaac
Presenter's Last Name:: Ergas
Title (eg: professor, assistant professor, chair, etc):: Staff Scientist
Degree(s): PhD, MPH
Contact Email:: Isaac.J.Ergas@kp.org
Organization:: Kaiser Permanente Northern California Division of Research
Project Title:: The Pathways Study data portal: an automated, web-based platform for data sharing in a large cohort of breast cancer survivors
Additional Authors:
1. First Name: Isaac
   Middle Initial: J.
   Last Name: Ergas
   Degree(s): Ph.D., MPH
   Organization: Kaiser Permanente Northern California Division of Research
2. First Name: Janise
   Middle Initial: M.
   Last Name: Roh
   Degree(s): MSW, MPH
   Organization: Kaiser Permanente Northern California Division of Research
3. First Name: Lia
   Middle Initial: D.
   Last Name: D'Addario
   Degree(s): MPH
   Organization: Kaiser Permanente Northern California Division of Research
4. First Name: Alexa
   Last Name: Zimbalist
   Degree(s): MS
   Organization: Kaiser Permanente Northern California Division of Research
5. First Name: Cecile
   Last Name: Laurent
   Degree(s): MS
   Organization: Kaiser Permanente Northern California Division of Research
6. First Name: Jia
   Last Name: Li
   Degree(s): MS, MPH
   Organization: Kaiser Permanente Northern California Division of Research
7. First Name: Clara
   Last Name: Yang
   Degree(s): MPH
   Organization: Kaiser Permanente Northern California Division of Research
8. First Name: Kelly
   Last Name: Radimer
   Degree(s): MA, MS
   Organization: Kaiser Permanente Northern California Division of Research
9. First Name: Sri
   Last Name: Chimmula
   Degree(s): BS
   Organization: Kaiser Permanente Northern California Division of Research
10. First Name: Kanchana
    Last Name: Chandrasekaran
    Degree(s): BT
    Organization: Kaiser Permanente Northern California Division of Research
11. First Name: Deepmala
    Last Name: Budhija
    Degree(s): MS
    Organization: Kaiser Permanente Northern California Division of Research
12. First Name: Adam
    Last Name: Boroian
    Degree(s): MFA
    Organization: Kaiser Permanente Northern California Division of Research
13. First Name: Rochelle
    Last Name: Payne Ondracek
    Degree(s): Ph.D.
    Organization: Roswell Park Comprehensive Cancer Center
14. First Name: Marilyn
    Middle Initial: L.
    Last Name: Kwan
    Degree(s): Ph.D.
    Organization: Kaiser Permanente Northern California Division of Research
15. First Name: Christine
    Last Name: Ambrosone
    Degree(s): Ph.D.
    Organization: Roswell Park Comprehensive Cancer Center
16. First Name: Lawrence
    Middle Initial: H.
    Last Name: Kushi
    Degree(s): Sc.D.
    Organization: Kaiser Permanente Northern California Division of Research

Abstract::
Background:  The recent NIH Data Management & Sharing (DMS) policy outlines appropriate sharing of NIH-supported data. The Pathways Study, a prospective cohort of 4,504 breast cancer survivors diagnosed at Kaiser Permanente Northern California from 2005–2013, is developing an online data portal to make study-data and resources accessible while safeguarding privacy.
Methods: The portal includes: (1) study overviews and research team profiles; (2) collaborators, ancillary studies, publications, and dissemination of findings such as news stories and webinars; (3) downloadable questionnaires, data dictionaries, and biospecimen information; (4) interactive visualizations; (5) data explorer and request system; and (6) guidelines for data use, IRB requirements, and quality control prior to manuscript submission. 
Data availability will be built-out incrementally, beginning with frequently requested data domains (e.g., demographics, tumor characteristics, outcomes) and later to additional domains. Data will be curated and uploaded into an SQL Server, then transferred daily into Oracle APEX to support the portal’s query and download functions. Future users can search variables, generate custom variable lists, and submit formal requests, which will integrate into internal workflows for review, approval, and delivery.
Results: The general website launched in October 2024, providing study information, dissemination of findings, and administrative resources. The data portal, including the variable explorer and data request system, is anticipated to launch in October 2025.
Conclusion/Discussion: We anticipate that the Pathways Study data portal will streamline data-sharing, facilitate collaboration, and maximize the value of cohort data. This platform also offers a model to meet the expectations of the NIH DMS policy.