Minutes to EDRN Data Sharing and Informatics Subcommittee Call 2025/02/03
Slides from this call can be found here: EDRN Informatics and Data Sharing Subcommittee Feb 2025-DMCC.pdf
EDRN Data Sharing and Informatics Subcommittee Call
Monday, February 3, 2025
Present (in BOLD):
- NASA/JPL: Dan Crichton, Sean Kelly, Heather Kincaid, Ashish Mahabal
- Arizona State University: Ji Qiu
- Boston University: Jennifer Beane
- EVMS: Julius Nyalwidhe
- DMCC: Jackie Dahlgren, Royce Malnik
- Johns Hopkins: Zhen Zhang
- NCI: Amanda Skarlupka, Guillermo Marquez, Christos Patriotis, Juan Miguel Villanueva
- PNNL: Tao Liu
- University of California: William Hsu
- University of North Carolina: Kristen Anton
Current Action Items:
- JPL will send updated FAIR guidance for review and feedback from the group.
- JPL to 1) populate the grid of Roles and Responsibilities for FAIR-based data presented on the call to the Public Portal, 2) document more, and 3) promote investigator trainings to ensure that NCI policies are followed. Update: Heather will send links.
- DONE: JPL to follow-up with lead PI of each project listed in LabCAS Hold
- PI’s are asked to review their data in LabCAS and let JPL know of any issues.
- Discuss a roadmap for additional hackathons and workshops Update: want to have this every other year, have groups bring in AI tools and capabilities—have one this year, and feed into next EDRN Workshop.
- DONE: JPL to schedule DICOM Header Standards call with EDRN DICOM Imaging Investigators—there will be a follow up this month.
- JPL to review EDRN FAIR Data Guidance Page and Training for each Collaborative Group on next call
Agenda/Discussion:
Data Sharing and FAIR Data Collection for EDRN—NCI Requirements
(see slides for more details)
Prepare data for AI readiness and usability. Quarterly reporting to NCI that provide an assessment of status of data. Next report in March, 2025. Will link in training and will be part of next report. Will identify data sets that comply with standard and work with sites on compliance. Slide with overview of knowledge environment. Organizing data sets on sites, types of collected data, and various other kinds of information. The data will be linked to biomarker information. Working with NIH on Common Data Fund to work with other biomarker models.
Challenges in Data Submission: Slide outlines this. Main issues:
- Data frequently contains PII
- Empty directories or small set of files or images that are blank—impact is that it will go unnoticed until time for analysis
- DICOM Headers are not standard among sites, requires significant effort to resolve
- Sites Don’t Review Data after uploading it—don’t find until much later, which is hard to resolve
Dan Crichton said that JPL is working to find these issues as they happen and try to prevent them before the data is uploaded. These issues will be addressed during training.
Other Challenges in making the data FAIR:
- Adding key information such as README files that explain the raw data to enable use
- SOPs that were used—descriptions of study procedures for reproducibility, clinical data
- Data Dictionaries that describe what data means
- Metadata Gaps—metadata is often incomplete
JPL drafted a FAIR Data Guidance Plan to help provide information to the sites as to what is expected to make their data FAIR. (see slide for specific details). Links will be sent for everyone to review and feedback. Dan Crichton reviewed table that outlines the Roles and Responsibilities for making data FAIR.
Proposed Solutions to Prevent PII During Upload: Heather Kincaid reviewed these solutions:
Provide de-identification resources—Heath and Human Services link to methods for de-identification of PHI website. Will ask for additional Piece of metadata relating to methods used for PHI removal such as Safe Harbor or Expert Determination.
Key “New Data Submission” Steps for EDRN Sites: Heather Kincaid said that JPL has revamped the LabCAS help and documentation. She mentioned the new data submission steps—for new data being uploaded or if sites are reviewing existing data—the slide summarizes the steps, including the FAIR guidelines. There is also a slide for updating existing data. This involves calls with the sites that input this data, which takes about 30 minutes.
DICOM Header Standards Working Group Call: Heather Kincaid said there was a call on January 23rd the goal was to draft a set of minimum required DICOM header tags applicable to all DICOM images and modality-specific required DICOM header tags. The goal is to support SOPs and ensure that images comply with FAIR principles. The action item from this call was to review the current EDRN.com tags and map them to TCIA’s identification tags. Another action item was for Yoga Balagurunathan, Radka Stoyanova, Chad He and Ashish Mahabal to discuss a proposal to standardize P-MRI Images—they hope that there may be additional funding to do this. The next call is on Thursday, February 27th at 3pm Eastern/12pm Pacific—let Heather Kincaid know if you want to participate in this call.
Posters EDRN Scientific Workshop: JPL plans to submit 4 posters for the EDRN Scientific Workshop in March.
Next Call: Monday, March 17th at 1pm Eastern/10am Pacific.