Response Evaluation in Neurofibromatosis & Schwannomatosis
REiNS is an international neurofibromatosis research effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2-SWN, and schwannomatosis.
Response criteria will continue to be modified as we gain experience in clinical trials for NF. We hope these criteria will be incorporated into future clinical trials and will improve our ability to determine and compare treatment efficacy.
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REiNS is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2-SWN, and schwannomatosis. Response criteria will continue to be modified as we gain experience in clinical trials for NF. We hope these criteria will be incorporated into future clinical trials and will improve our ability to determine and compare treatment efficacy.
History & Organization
The REiNS Collaboration was established in 2011 at the Children's Tumor Foundation annual NF Conference to achieve consensus within the NF community about future clinical trials and to accelerate the identification of agents which will benefit individuals with NF. Since its inception, the REiNS International Collaboration has played a key role in the creation and dissemination of outcome measures for clinical trials of neurofibromatosis and schwannomatosis.
Resources
All REiNS publications are available open access and free of charge, thanks to funding from the Children's Tumor Foundation. Key recommendations from each REiNS working group are summarized on the Recommendations page. For more information or to join a REiNS working group, contact us at reinscollaboration@gmail.com.
About the Conditions
How We're Organized
The REiNS collaboration is organized around ten working groups that focus on the following topics: functional outcomes, patient-reported outcomes, visual outcomes, neurocognitive outcomes, imaging outcomes, disease biomarkers, cutaneous neurofibromas, gene therapy, and patient representatives.
Leaders of the ten working groups are identified based on their expertise. Membership in each working group is open to any interested party and representatives from patient advocacy groups and funding agencies have been invited to participate in the effort. Each REiNS group establishes a meeting schedule; the majority of meetings are held by teleconference. In-person meetings of the entire group are held twice per year to coordinate efforts among the working groups and to achieve consensus within the larger group.
See the working groupsFor more information or to join a REiNS working group, contact us at reinscollaboration@gmail.com
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Explore the Collaboration
Join the REiNS Collaboration
Membership in each working group is open to any interested party, including patient advocates and funding agency representatives. Each REiNS group establishes its own meeting schedule; most meetings are held by teleconference with in-person meetings twice per year.
Contact: reinscollaboration@gmail.com