Lysosomal Storage Disease Data Sharing
Workshop, Webinar Series - Session 1: Setting the Scene

Monday, February 24, 2025

Overview of data sharing elements, considerations, data sharing policy, grantees responsibilities, repositories infrastructure, capacity building, the ethics of data sharing, and more. Presenters from academic and regulatory agencies.

Agenda:

1)      Welcome, Goals for the Workshop Series, Overview

• Krista Casazza PhD, RD, CSSD, C-Path & Cara M. Weismann, PhD, Orphan Disease Center

  • Presentation slides

2)      Setting the Scene: Overview of Data Sharing Elements and Considerations

• Barbara E. Bierer, MD, Professor of Medicine, Harvard Medical School, Faculty Director,   

  Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard

  • Presentation slides

3)      NIH Data Sharing Policy, Grantees Responsibilities, Repositories, Infrastructure, Capacity Building

• Cara M. Weismann, PhD, Orphan Disease Center & Krista Casazza PhD, RD, CSSD, C-Path

  • Presentation slides

  • Resources:

    https://sharing.nih.gov/data-management-and-sharing-policy/resources/learning?policy=DMS

    https://sharing.nih.gov/faqs#/data-management-and-sharing-policy.htm

4)      Ethics of Data Sharing

• Alison Bateman-House, PhD, MPH, MA, Research Assistant Professor, Division of Medical Ethics, NYU Grossman School of Medicine, NYU-PGTME Program in Gene Therapy and Medical Ethics

  • Presentation slides

5)      Questions & Discussion

• Presenters panel: Barbara E. Bierer, MD, Alison Bateman-House, PhD, MPH, MA, Cara M. Weismann, PhD, & Krista Casazza PhD, RD, CSSD

6)      Summary, Wrap up, Future Directions

• Cara M. Weismann, PhD, Orphan Disease Center & Krista Casazza PhD, RD, CSSD, C-Path

Please submit questions for Presenters & Feedback on the Lysosomal Storage Disease Data Sharing Workshops below: