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Adolescent and Young Adult Oncology Biorepository

Agenda. Overview of the AYAO programReview of ProposalNeed For AYAO ResearchConcept DescriptionConcept GoalsConcept PhasesRequired ResourcesSequence

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Adolescent and Young Adult Oncology Biorepository

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    1. Adolescent and Young Adult Oncology Biorepository Project Action Group Discussion Forum October 8, 2009

    2. Agenda Overview of the AYAO program Review of Proposal Need For AYAO Research Concept Description Concept Goals Concept Phases Required Resources Sequence & Timing Q&A

    3. Research Needs for AYAO Each year, nearly 70,000 15-39 year olds are diagnosed with cancer. Cancer is the leading disease killer among 20-39 year-olds. Unlike younger and older cancer patients, survival rates for AYAs have not increased since 1975 and for 30-34 year olds range, survival has decreased

    4. Young adults tend to be diagnosed with different types of cancer than older and younger patients and their cancers may develop from different biological variables and, subsequently, require different treatments Why is AYAO unique?

    5. AYAO Progress Review Group Recommendation 1 Identify the characteristics that distinguish the unique cancer burden in the AYAO patient. Elucidate unique biologic characteristics of AYA cancers and AYA patients that affect disease outcome in this population. Elucidate AYA life stage/developmental characteristics that influence care seeking, adherence to treatment, and medical and psychosocial outcomes. Identify and ameliorate health disparities experienced by AYA cancer patients and survivors.

    6. AYAO Progress Review Group Recommendation 3 Create the tools to study the AYA cancer problem Create a large prospective database of AYA cancer patients to facilitate research on this age group. Increase the number of annotated specimens to support research progress. Create/modify needed assessment tools specific to AYA cancer issues. Improve grant coding and search term standardization to enable evaluation of research efforts and progress. Expand clinical trials for AYAs to increase treatment choices and accelerate treatment advances.

    7. LIVESTRONG AYAO Participating Sites MD Anderson Oregon Health State University Nationwide Children’s Hospital Indiana University Kaiser Foundation Hospitals Vanderbilt-Ingram Cancer Center

    8. AYAO Federated Network OTIR: Focuses on technology-based initiatives & industry partnerships OBBR (Office of Biorepository and Biospecimen Research): Jim Vaught & Helen Moore TTB (Technology Transfer Branch): Jeff Thomas NCICB (Center for Bioinformatics): George Komatsoulis & Liming Yang DCEG (Division of Cancer Epidemiology and Genetics - Biostatistics Branch): Mitch Gail & Ruth Pfeifer DCB (Division of Cancer Biology - Mouse Models of Human Cancer): Cheryl Marks & Dan Gallahan DCTD (Division of Cancer Treatment and Diagnosis): Gary Kelloff & Dan Sullivan CCR (Center for Cancer Research – Genomics and Bioinformatics Group): John Weinstein & Timothy Veenstra DCP (Division of Cancer Prevention – EDRN): Sudhir Srivastava OCTR (Office of Centers, Training and Resources - Organ Systems Branch): SPOREs – Jorge GomezOTIR: Focuses on technology-based initiatives & industry partnerships OBBR (Office of Biorepository and Biospecimen Research): Jim Vaught & Helen Moore TTB (Technology Transfer Branch): Jeff Thomas NCICB (Center for Bioinformatics): George Komatsoulis & Liming Yang DCEG (Division of Cancer Epidemiology and Genetics - Biostatistics Branch): Mitch Gail & Ruth Pfeifer DCB (Division of Cancer Biology - Mouse Models of Human Cancer): Cheryl Marks & Dan Gallahan DCTD (Division of Cancer Treatment and Diagnosis): Gary Kelloff & Dan Sullivan CCR (Center for Cancer Research – Genomics and Bioinformatics Group): John Weinstein & Timothy Veenstra DCP (Division of Cancer Prevention – EDRN): Sudhir Srivastava OCTR (Office of Centers, Training and Resources - Organ Systems Branch): SPOREs – Jorge Gomez

    9. Concept Description Building an infrastructure to support biospecimen collection, storage, and sharing among academic sites portal to enable querying and access to adolescent and young adult cancer biospecimens Identifying necessary annotations to identify clinically-relevant information and collection and storage procedures Integrating the specimen management systems into a centralized portal Completing a policy and management needs assessment to address an operating model for a federated AYAO biorepository, formalize data sharing agreements, patient privacy and confidentiality, consent and re-consent for minors, individual right to data, and Intellectual property issues related to using data for research purposes

    10. Goals and Vision

    11. Concept Phases Discovery Catalogue and Inventory Collection protocols and storage conditions QA/QC procedures Architecture and Data Elements Minimal Preliminary Dataset for information exchange Standardize clinical annotations Integration Data portal and interface Data sharing agreements Proof of Concept and Test Environment Policy and Management Needs Assessment Accessibility Define system of support for prospective research and expansion

    12. Discovery – Completion Targeted for Fall Catalogue and Inventory Approximately 25-30k samples 6 centers, multiple satellite locations Dozens of tumor types Non-tumor biospecimen Samples date back to 1980’s Collection protocols and storage conditions All retrospectively collected samples Varying storage conditions Need to define appropriate reporting on protocols QA/QC procedures Need to define appropriate QA/QC data fields Sample Tracking

    13. Architecture and Data Elements Minimal Preliminary Dataset for information exchange Define Common Data Elements Patient Information Biospecimen information Standardize clinical annotations caBIG compliance

    14. Integration Data portal and interface Development and coordination with sites Information exchange Hosting Data sharing agreements Adoption

    15. Proof of Concept and Test Environment Policy and Management Needs Assessment Patient consent Minor re-consent Formalized data sharing agreement Sample acquisition Publication Accessibility Patient information and privacy Define system of support for prospective research and expansion

    16. Required Resources Architecture lead to model integration and build information infrastructure for non-caBIGŽ compliant sites Integration lead to coordinate site activities Policy lead to identify and finalize sharing agreements

    17. Sequence and Timing Discovery Phase (inventory and cataloguing) targeted for mid to late Fall “Lightweight” infrastructure and portal architecture targeted for Spring 2010 Environment and usability testing summer 2010

    18. Q & A

    19. Lance Armstrong Foundation Adam Clark: adam.clark@livestrong.org Brandy Gazo: brandy.gazo@livestrong.org CLOSING THE GAP|A STRATEGIC PLAN: http://www.livestrong.org/atf/cf/{D0794917-422C-499C-9C48-9ED3DDC42947}/LAF%20YAA%20Report.pdf BIG Health Malcolm James: actiongroupconvener@BIGHealthconsortium.org The AYAO Concept document and this presentation: https://bighealth.nci.nih.gov/index.php/Adolescent_and_Young_Adult_Oncology_(AYAO)_Biorepository

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