Duke Index of Biospecimens to Enable Sharing of

Duke Index of Biospecimens to Enable Sharing of Biospecimen Collections Aenoch J. Lynn and Helena J. Ellis Duke Biobank and Duke Translational Medicine Institute, Duke University, Durham, NC Abstract User Interface Methods The Duke Biobank created the Index of Biospecimens (the Index) to promote the sharing of sample collections. The Index holds metadata on collections, Duke Index of Biospecimens Data Governance for the Index • • Web tool to facilitate the secondary use of samples • Duke-specific extensions were added to meet Duke’s requirements • The CBM: • Duke researcher with a valid Net. ID may use the Index • Specimens must have been collected under an IRB protocol • PI of the collection maintains control • All requests to use samples goes through PI • PI responsible for honoring participant consents • Collections are not moved from their storage location • Data in the Index may be removed at any time participants, samples; aggregate counts on participants and samples; and attributes indicating additional types of data that may be available and how the samples may be shared. Individual Based on NCI’s Specimen Resource Locator and Common Biorepository Model (CBM) • • • participant data are not held in the Index. Access to the Index is restricted through Shibboleth authentication. Was designed for national sharing of samples Is a repository of sample collection metadata Collecting samples is one of the most expensive Was developed by a national collation of academic and industry leaders steps in clinical and translational research. The Index of Biospecimens is a catalog of sample collections available for sharing within Duke. The Index allows researchers in need of samples for research to browse through a catalog of available collections and to contact PIs of collections of interest. • 140 male, 145 female, 10 unknown, 5 not reported • White, Black, Asian, native American • 1200 samples • Collected whole blood • Type 1 Diabetes Mellitus diagnosis • 300 blood, 300 serum, 600 DNA • All samples stored at -80°C • Additional demographics, Lab data, Family history, Participant medical history Search web interface for collection metadata Henry (Hal) Beresford, DOCR Index Class Model (based on the CBM) Institution Collection Protocol Specimen Availability Homepage URL Organization Name Start Date End Date Available to non-Duke Organizations * Available to Commercial Organizations * Available to non-US Organizations * Collaboration Required * Contact Person Group Annotation Availability Patient Demographics Available * Exposure History Available * Histopathologic Data Available * Non-Omics Lab Data Available * Longitudinal Specimens Available * Matched Specimens Available * Family History Available * Study Treatment Data Available * Follow-up Permissible * Outcome Information Available * Reference Pub. Med. ID Participant Collection Gender * Ethnicity * Participant Count Subject recruitment Subject consenting Sample collection Sample processing Secondary use of existing collections Searching existing collections Sample processing Reuse of existing collections saves money and resources Race * Specimen Collection Anatomical Source * Specimen Type * Participant Count Existing Collection Details • The Index of Biospecimens is based on the NCI’s Specimen Resource Locator, version 2. 0 • Source code for the SRL is available through NCI • Customizations performed by Information Management Services (IMS), Calverton, MD • Modified source code available through the Duke Biobank or IMS Existing Collection Patient Age Group * (At Time Of Collection) = New addition * = Queryable Field † Existing Collection ? Preservation * Search collection metadata Existing Collection • • Justin Levens, DOCR Diagnosis * Index of Biospecimens • • Name Email Address Phone Address † = Duke-specific table Primary collections are expensive Special Thanks Application Code Omics Lab Data Available * Medical History Available * Consent for Secondary Use * Data Shared Outside of Duke Short Protocol Description PI Preferences for Method of Contact Hide Group Affiliation Contact PI of collection to request access to samples Existing Collections NIH/NCRR grant UL 1 RR 024128 Duke Annotation Identify collections of interest Research Study DTMI Biomedical Informatics Core • CBM data model too complex for most data managers • Partnered with Duke Office of Clinical Research (DOCR) to assist with data manipulation • Help larger groups with programmers load their own data into the Index • Email Biospecimen Expediter for help Making Connections – Wants Samples New Collection Duke Cancer Institute Getting Data Into the Index 300 participants • • • Duke University School of Medicine Kevin Meagher, IMS Successful diabetes researcher with over 15 years of clinical research experience has a sample collection with: • Search Results Ben Powers, IMS Making Connections – Has Collection Problem Addressed Search Interface Acknowledgements Index of Biospecimens Existing Collection ? ? Researchers in need of research samples had no easy way of discovering if existing collections are available at Duke (919) 668 -8026 biobanker@duke. edu Contact Aenoch Lynn Aggregate data on subjects and samples • • • Gender Race/Ethnicity Age at Collection Diagnosis Anatomical Source Specimen Type Preservation Availability Annotations ! aenoch. lynn@duke. edu +1 -919 -668 -8026 Helena Ellis Researcher gets contact information for existing collections that match search criteria Duke Biobank Director helena. ellis@duke. edu +1 -919 -668 -7831