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Monday, December 23, 2024

Illinois Department of Children and Family Services Institutional Review Board discusses cancer registry

Hall

The Illinois Department of Children and Family Services Institutional Review Board met June 28.

Illinois Department of Children and Family Services acts in the best interest of every child it serves by helping families provide a safe environment for their children and strengthening families at risk of abuse or neglect.

Here are the meeting minutes as provided by the Illinois Department of Children and Family Services Institutional Review Board:

CHICAGO Debra Dyer, Mark Holzberg, Paula Jaudes, Robin Albritton

ON PHONE Janet Ahern, Arricka Newingham, Brooke Taylor

CALL TO ORDER Debra Dyer called the meeting to order at 2:01 p.m. A quorum was present.

APPROVAL OF MINUTES MOTION: Mark Holzberg made a motion to approve the minutes from May 24, 2016.

Janet Ahern seconded the motion, Robin Albritton abstained since she did not attend last month’s meeting, and a unanimous vote from the remaining board members carried the motion.

FOLLOW UP

Tracy Fehrenbach. Mental Health Juvenile Justice Program.

Researcher sent responses to the board’s questions, which were distributed to the board. No other discussion.

MOTION: Janet Ahern motioned to approve the proposal.

Paula Jaudes seconded the proposed motion and a unanimous vote from the remaining board members carried the motion.

Jill Schreiber. Fostering Well-Being.

Researcher sent responses to the board’s questions, which were distributed to the board.

Mark sent a response to the board not advocating for this research. He indicated that generic religion or commitment to faith is fine, but not specific.

Researcher is encouraged to resubmit research proposal excluding the references to specific religious inquiries. Brooke will let the researcher know.

MOTION: Motion made to table this proposal until changes in the questioning are made by the researcher.

NEW PROPOSALS

Bethany Lee. Evaluation of the National Training Initiative on Adoption Mental Health Competence.

Evaluation of a program, instead of research. This is coming through the feds. This is a PILOT that we are already doing. One of eight states that agreed to PILOT this program. It’s a family high level program.

Has anyone looked at the curriculum? Board needs to see the curriculum. Nothing about trauma except one word in the evaluation.

Who OKd this curriculum? Where did this come from? Who is going to do the PILOT? What is the current status of this curriculum? Who is the researcher’s contact at DCFS?

Mary Lou Schmidt. Every Child A Registry, Eligibility Screening, Biology and Outcome Study.

This research proposal is regarding put kids with cancer into registries. Extra bone marrow tissue that would go into the registry. A two-part consent is needed. Can they be put into the registry? Can they have blood drawn and bone marrow.

Guardian would want to know registry status so she would know which of our kids have cancer.

Registry will show: trends, ages, gender, what cat scans show/don’t show and what is being done for HIV.

MOTION: Paula Jaudes motioned to approve the proposal.

Janet Ahern seconded the proposed motion and a unanimous vote from the remaining board members carried the motion.

Ram Yogev. IMPAACT P1112: Open-Label, Dose-Escalating, Phase I Study to Determine Safety and Pharmacokinetic Parameters of Subcutaneous (SC) VRC02, a Potent Anti-HIV Neutralizing Monoclonal Antibody, in HIV-1 Exposed Infants, Version 1.0, dated August 4, 2014 – AMENDMENT.

Discussion around whether in the future if one dose will be enough. They are doing more doses currently in South Africa.

Research proposal must adhere to same caveat as last time. That wards may stay in the study and that only blood can be drawn.

MOTION: Paula Jaudes motioned to approve the administration of the follow up only and not the administration of the drug.

Janet Ahern seconded the recommended motion and a unanimous vote from the remaining board members carried the motion.

OTHER

Judith Havlicek Paper #1. No comments.

Judith Havlicek Paper #2. No comments. Arricka will recuse herself from commenting as she is the supervisor for one of the researchers on this paper.

Lucy Bilaver Paper. No comments.

Paula Jaudes Paper. Excellent and insightful. Totally answered the question about how to quantify child well-being.

Dr. Jaudes will let everyone know when this paper is OKd to share.

Stephen Budde Abstract. No comments.

Open Meetings Act Rule Adoption. The following rule was recommended for adoption: When practical, any board member attending the meeting by other means, whether by phone or video conference call, shall notify the IRB coordinator prior to the date of the meeting.

MOTION: Janet Ahern motioned to approve the adoption of this rule.

Mark Holzberg seconded the recommended motion and a unanimous vote from the remaining board members carried the motion.

Next meeting was scheduled for July 26, 2016 at 2 PM.

The meeting adjourned at 2:40 p.m.

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