REiNS International Collaboration

Mission Statement

REiNS is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2, 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.

The REiNS collaboration is organized around nine 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 nine 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 for recommendations. Please go to the webpage of each working group to learn more.

Resources

Aligned with our philosophy of collaboration and transparency, all REiNS publications are available open access and free of charge.  Most publications have been published open-access thanks to funding from the Children’s Tumor Foundation, and the remainder are available open-access in PubMed Central. Links to all REiNS publications are available on our “Publications” tab.  Key recommendations from these publications regarding clinical trial outcome measures are summarized on the “Recommendations” tab.  Agendas from past REiNS biannual meetings are available on the “News & Meetings” tab, and copies of presentations slides are available on the “Presentations” tab. 

If you would like more information about the REiNS International Collaboration, or are interested in joining a REiNS working group, please contact us at vmerker@mgh.harvard.edu and reinscollaboration@gmail.com