Question 1

What is neurofibromatosis research?

Accepted Answer

Neurofibromatosis research studies the diagnosis, treatment, and clinical trial endpoints for NF1, NF2-SWN, and schwannomatosis. The REiNS International Collaboration standardizes response criteria and outcome measures so that clinical trials across these conditions can be compared and combined.

Question 2

What is the REiNS International Collaboration?

Accepted Answer

REiNS (Response Evaluation in Neurofibromatosis and Schwannomatosis) is an international research collaboration that develops standardized clinical trial endpoints and outcome measures for neurofibromatosis and schwannomatosis, organized into working groups covering imaging, patient-reported outcomes, functional outcomes, visual outcomes, neurocognitive outcomes, disease biomarkers, cutaneous neurofibromas, gene therapy, and artificial intelligence.

Question 3

What conditions does REiNS neurofibromatosis research cover?

Accepted Answer

REiNS research covers NF1, NF2-SWN (schwannomatosis related to NF2), and non-NF2 schwannomatosis, focusing on clinical trial endpoints and outcome measures such as imaging endpoints, patient-reported outcomes, functional and visual outcomes, neurocognitive measures, and disease biomarkers.

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December 2017 Winter REiNS Meeting, Bethesda, MD

June 2017 Summer REiNS Meeting, Washington, DC

December 2018 REiNS Winter Meeting, Bethesda, MD

December 2019 REiNS Winter Meeting, Baltimore, MD