Working Groups

Gene Therapy

Ethical issues surrounding gene therapy trials and proposed clinical trial endpoints for gene therapy for NF1, NF2, and Schwannomatosis.

Leadership

About This Group

The goals of the gene therapy working group are (1) to discuss ethical issues surrounding trials of gene therapy and (2) to propose clinical trial endpoints for gene therapy that can lead to drug approval for NF1, NF2, and Schwannomatosis.

Current group leader: Scott Plotkin, MD, PhD

Current Work

The Gene Therapy group was formed in January 2022. Initial projects focus on defining the important ethical issues surrounding gene therapy in the NF/SWN patient population and establishing appropriate, measurable endpoints for future clinical trials.

Additional Information

No additional sections yet.

Working Group Snapshot & Focus Updates

No snapshot update posted yet.

Publications & References

Publication 1 · 2024 · Clinical Trials

Gene therapy for neurofibromatosis: ethical considerations and proposed endpoints for clinical trials

Bakker A, Plotkin SR, et al. Clin Trials. 2024;21(1):88–97.

Documents & Resources

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Join or Contact This Group

Membership is open to all interested parties. Meetings are primarily held by teleconference.

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