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Ethics Committee

 

CARRA Ethics Committee Election Candidates

Below are the candidates for the Ethics Committee election. Ballot will be emailed to all current voting members.


CARRA

Gloria Higgins, PhD, MD
The Ohio State University College of Medicine

Candidate Bio

Candidate COI Disclosure

Candidate Statement
As a charter member of PRRN (later re-named CARRA), I have had the opportunity to see this organization grow, and to both help develop and participate in collaborative research projects dear to my heart.  I served for 7 years as vice-chair of the Scleroderma, Vasculitis, and Rare Diseases Committee, back when this group was quite small and not divided into more specific disease research groups.  Early on, I was active in the ANCA-associated vasculitis projects.  More recently, I am working in the localized scleroderma group.  Although I have retired from providing direct care for children with rheumatic diseases, pediatric rheumatology is still my avocation, and a very large part of my world. 

It is clear that through CARRA, we have achieved far more for children with rheumatic disease than we could have achieved individually.   As relationships with the Arthritis Foundation, the pharmaceutical industry, parent/patient groups, and other stakeholders have developed, CARRA’s ability to promote research is perhaps beginning to lean as much towards monetary support as moral support.   In this new era, we encounter greater potential for conflicts of interest and ethical dilemmas, and greater need to try to avoid them.   

Since medical school, I have been interested in ethical issues in research and the practice of medicine.  While on faculty at LeBonheur Children’s Hospital in Memphis, TN, I served for 3 years on the hospital ethics committee, and for 5 years on the hospital research review committee (sub-IRB).  Subsequent to moving to Nationwide Children’s Hospital in Columbus, OH, I was a member of the ACR Pediatric Section Executive Committee for a term of 3 years, and later served on the ethics committee of the ACR for 3 years. These experiences have given me insight into the kinds of ethical issues that institutions and professional groups encounter, and how they seek to resolve them.

I believe I have the relevant experience needed to serve on, and help give shape to, the first CARRA Ethics Committee.  Members who know me personally can vouch for my character and diligence.  Now that I have more time to spend, I would be very happy for this opportunity to give back.


CARRA

Edward Oberle, MD, RhMSUS, FAAP
Nationwide Children's Hospital

Candidate Bio

Candidate COI Disclosure

Candidate Statement
I would very much like the opportunity to serve on the CARRA Ethics Committee. I am currently involved in CARRA through my work at Nationwide Children’s Hospital in Columbus, OH, and I greatly value the contributions of CARRA to advancing the field of pediatric rheumatology through collaborative research endeavors. I believe that ensuring and maintaining the ethics and professionalism of the CARRA is of utmost importance in order to continue to hold our field to the highest standards of research and practice.  I have served on various hospital advisory boards and believe the knowledge and experiences gained from participating in those roles will allow me to be a productive member of this team.  I would be honored to serve CARRA through my membership on its ethics committee. 


CARRA

Karen Onel, MD
Hospital for Special Surgery

Candidate Bio

Candidate COI Disclosure

Candidate Statement
My experiences as a pediatric rheumatologist have left me well positioned to be an effective and thoughtful member of the ethics committee, given its scope of work, .

As an academic pediatric rheumatologist, my focus has been on collaborative networks and clinical research, including multiple studies with both the Pediatric Rheumatology Collaborative Study Group (PRSCG) and Children’s Arthritis and Rheumatology Research Alliance (CARRA). For the PRCSG, I serve on the advisory council which has allowed me more input on how and which diseases to study. In addition to work with the PRCSG, I am an active participant in CARRA. I have been CARRAnet site Principal investigator at 2 institutions and I am co-leader of the systemic onset Juvenile Idiopathic Arthritis (JIA) committee and have been involved in the derivation of consensus treatment plans for the treatment of newly diagnosed disease. As pediatricians were are committed to collaborative research and to increasing participation until all children with rheumatic diseases are able to participate in studies.

As I have spent more time in academic medication, I have spent an increasing amount of time studying clinical trial protocols and evaluating their scientific merit and assaying for proof of human subject protections. Through my work as an IRB member and Vice-Chair at the University of Chicago and at Hospital for Special Surgery, I have become increasingly interested in the topic of how conflict of interest informs our clinical trials. I joined the CARRA Finance committee to gain a better understanding of the fiscal underpinnings of our network and how COI may affect decision making. In addition, I have served on the ACR Committee on Ethics and Conflict of Interest which has afforded me access into the mechanism by which big networks manage COI. In February I joined the CARRA ad hoc ethics committee to help with the effort to formalize the scope of work and process for an elected committee for which I am now applying. As the Sunshine Act has brought the concept of our potential Conflicts of Interest into the public domain, it will be important to have members with experience and training in identifying and resolving conflicts before they become problematic and irreversible. 

Finally, but truly first and foremost, I am a clinician dedicated to providing care to children with rheumatic diseases.  During the past almost 25 years, I have been privileged to see great advances in the care of these children leading to markedly improved outcomes. The journey from IM gold to Tocilizumab and beyond has been rewarding beyond any expectations.  However, the work is not done. We still take care of children who fail all available treatments, have unacceptable side effects and have diseases for which no treatment exists or worse where no one cares if a treatment exists.  We have to be strong advocates for these children and we have to set the agenda to make certain that the needs of these children and their families are met.  To do this we must uphold the highest ethical standards for which reason I seek election to the CARRA ethics committee.


CARRA

Egla Rabinovich, MD, MPH
Duke University Medical Center

Candidate Bio

Candidate COI Disclosure

Candidate Statement
I would be happy to serve on the Conflict of Interest Committee for CARRA if elected.  I strongly believe in CARRA’s mission, and identifying and managing conflict must be done as we move forward as an organization.  I currently serve as the Chair of the Conflict of Interest Committee for the American Board of Pediatrics.  Additionally, I serve as IRB Chair at Duke. Both these experiences will position me well to serve CARRA as a member of the COI committee.


Committee Eligibility

  • Must be a member in good standing with CARRA:
    • Member is current on membership dues and membership information (location, contact information, and membership status) is up-to-date
    • Member participates in at least one Research Committee (e.g. JDM, JIA, SVARD, etc.) of CARRA
    • Member has attended at least one annual CARRA meeting over the last 3 year period
  • Committee members must not be paid (directly or via salary support paid to the member’s institution) by CARRA for work on behalf of CARRA (e.g., Steering Committee members, Executive Committee members, interns are not eligible), with the exception of CARRA intramural grants
  • CARRA members who currently serve on the following committees are not eligible to serve on the Ethics Committee
    • Steering Committee
    • Board of Directors
    • Executive Committee
  • Fellows are not eligible

SOW for Ethics Committee Members

  • Review and make recommendations regarding the ethics and professionalism of the organization, its officers, directors, and members
  • Review and make recommendations regarding any conflicts reported during the annual COI/COC disclosure process
  • Address and respond to questions of conflict of interest
  • Be responsible for reviewing and, from time to time, proposing modifications to the CARRA Code of Ethics and the CARRA Conflict of Interest Guidelines
  • Review charges alleging professional misconduct by members
  • Respond to requests from the Board of Directors for guidance and recommendations on matters involving ethics and conflict of interest
  • Develop information to educate the membership concerning the Code of Ethics and conflict of interest issues
  • Organize and establish subcommittees and task forces as the Committee deems necessary or appropriate to carry out its objectives, subject to the approval of the Board of Directors
  • Submit yearly COI/COC disclosure forms
  • Inaugural  Ethics Committee will develop the committee charter

Committee Composition

  • The inaugural Ethics Committee will consist of 5 members
  • 4 members will be added in year 2
  • The Ethics Committee will include at least one individual who is not a member of CARRA, appointed by the CARRA Board of Directors
  • Chair and Vice Chair of committee will be elected by the committee during year 1
  • Subsequent years, the committee will elect the vice chair, who will assume the Chair role in year 2
  • The committee will aim to have an odd number of members, with the total number of committee members not to exceed 11

Committee Member Time Commitments

  • Committee members are asked to serve 2 year terms*
    • *2-3 members of the first Ethics Committee will be asked to serve 3 year terms
    • Chair serves 1 year term as chair, during his/her 2 year term, with the exception of the 1st chair, who will be asked to serve 2 years as Chair
    • Vice chair serves 1st year of 2  year term as VC, then 2nd year as Chair
  • 2 - 3 conference calls per year
  • 1 in person meeting, held at the CARRA Annual Meeting
  • Members are "on call" for issues that arise requiring that members be extremely responsive and able to work under short time frames