Ontology of Informed Consent: An Approach to Specimen and Data

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First Spring Workshop of the Clinical and Translational Science Ontology Group

Announcement

The Clinical and Translational Science Ontology Group (CTSOG) invites you to join us February 26-27, 2018 in Little Rock, Arkansas to discuss uses cases and necessary evolution of the informed consent ontology . Example use cases include sharing of biospecimens, precision medicine (e.g. regarding kidney), and informed consent in clinical trials. The workshop is a hands-on event, which aims to provide a new release version of the Informed Consent Ontology (ICO).


Organizers

Workshop Co-organizers:

Brochhausen, Mathias (University of Arkansas for Medical Sciences, Little Rock, AR), mbrochhausen@uams.edu

He, Yongqun (Oliver) (University of Michigan Medical School, Ann Arbor, MI), yongqunh@med.umich.edu

Manion, Frank (University of Michigan, Ann Arbor, MI), fmanion@med.umich.edu

Obeid, Jihad (The Medical University of South Carolina, Charleston, SC), jobeid@musc.edu

CTSOG Co-chairs:

Bill Hogan (University of Florida College of Medicine, Gainesville, FL), hoganwr@ufl.edu

Barry Smith (University at Buffalo, Buffalo, NY), phismith@buffalo.edu


Sponsors

  • The Translational Research Institute ([1]), a University of Arkansas for Medical Sciences institute and CTSA hub supported by the National Center for Advancing Translational Sciences at the National Institutes of Health.


  • The College of Medicine ([2]) at the University ofArkansas for Medical Sciences.

Date

February 26 (Monday) - 27 (Tuesday), 2018

Venue

UAMS Reynolds Institute on Aging, Room 1180/1190


Schedule Day 1: February 26

8:30am: Registration and Breakfast

9:00am: Welcoming remarks

9:20am: Workshop format

9:30am: Introduction to ICO - Presenter: Oliver He

9:45am: Use cases - Facilitator: Mathias Brochhausen

10:15am Coffee Break

10:45am: Hands-on: Filling gaps and solving issues in ICO, Part 1 - Facilitator: Jihad Obeid

12:15pm Lunch

1:15pm: Hands-on: Filling gaps and solving issues in ICO, Part 2 - Facilitator: Frank Manion

3:00pm: Coffee Break

3:30pm: Hands-on: Filling gaps and solving issues in ICO, Part 3 - Facilitator: Oliver He

5:00pm: End of Day 1


6:30pm: Dinner (Note: A nice Little Rock restaurant will be reserved for those who wish to join. The cost of dinner is not included in the workshop.)


Schedule Day 2: February 27

8:30am: Registration and Breakfast

9:00am: Hands-on: Filling gaps and solving issues in ICO, Part 4 - Facilitator: Mathias Brochhausen

10:30am: Coffee break

10:45am: Hands-on: Filling gaps and solving issues in ICO, Part 5 - Facilitator: Jihad Obeid

12:15pm: Lunch

1:15pm: Hands-on: Filling gaps and solving issues in ICO, Part 6 - Facilitator: Frank Manion

2:15pm: Preparation for ICO release - Oliver He

3:15pm Preparation of Workshop paper - Facilitator: Mathias Brochhausen

4:00pm: Workshop adjourns


Rationale

Informed consent is an ethical and legal requirement for biomedical research. Federal policy for the protection of human subjects under the Common Rule addresses several basic elements required for the informed consent process. However, in the era of genomic research, biobanking and data sharing, several challenges arise in pinning down exact obligations included on consent forms, giving rise to ambiguity and the potential for misinterpretation of what has been consented to. This workshop will be guided by brief presentations of use cases (5-10 minutes each) followed by hands-on sessions during which participants will propose and discuss solutions to known issues regarding the Informed Consent Ontology (ICO). Participants will be provided with background information about ICO and the Document Act Ontology (d-acts). The results will be published and the updated ontology will be released in the public domain.


Goals

The Clinical and Translational Science Ontology Group was established in 2012 to leverage the use of common ontologies to support different aspects of information-driven clinical and translational research. The focus of this meeting is to explore new and existing uses of common ontologies to support creation, sharing, and analysis of clinical data.

Like its predecessors in the series, this meeting is designed to bring together clinical and translational scientists from across the CTSA Consortium who are interested in using ontologies to promote discoverability and interoperability of biomedical data.

The goal of this particular workshop is to evolve the Informed Consent Ontology (ICO) to where it can provide the basis of specimen and data sharing for CTSA related efforts, including information sharing across different sites with different Institutional Review Board (IRBs). How ICO can be used to support specimen and data sharing for precision medicine research will also be investigated. One target is to prepare a new release version of the ontology and publish the results of our workshop as a journal paper.

Persons interested in attending or in presenting at the meeting should write to Mathias Brochhausen, mbrochhausen@uams.edu.


Travel Fund Application

UAMS' Translational Research Institute (TRI) is providing two travel stipends of $1000 each for new investigators to attend the workshop.

If you are interested, please submit a short vita with a rationale for attendance to Dr. Mathias Brochhausen at mbrochhausen@uams.edu by January 15, 2018. Decisions will be made January 31, 2018.

Participants

Brochhausen, Mathias (University of Arkansas for Medical Sciences, Little Rock, AR)

He, Yongqun (Oliver) (University of Michigan Medical School, Ann Arbor, MI)

Manion, Frank (University of Michigan, Ann Arbor, MI)

Obeid, Jihad (The Medical University of South Carolina, Charleston, SC)

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