The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS)


At a Glance
  • Status: Active Consortium
  • Year Launched: 2011
  • Initiating Organization: Children's Tumor Foundation
  • Initiator Type: Nonprofit foundation
  • Disease focus:
    Neurofibromatosis
  • Location: International
REiNS Logo Final copy

Abstract

The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration was established in 2011 at the Children's Tumor Foundation meeting to achieve consensus within the NF community about the design of future clinical trials, with a specific emphasis on endpoints. The REiNS Collaboration includes 7 working groups that focus on imaging of tumor response; functional, visual, patient-reported, and neurocognitive outcomes; whole-body MRI; and disease biomarkers.

Mission

The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration was established with the goal to develop consensus recommendations for the use of endpoints in neurofibromatosis (NF) clinical trials. This supplement includes the first series of REiNS recommendations for the use of patient-reported, functional, and visual outcomes, and for the evaluation of imaging response in NF clinical trials.

Consortium History

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.

Structure & Governance

The REiNS collaboration is organized around eight working groups that focus on the following topics: imaging of tumor response, functional outcomes, visual outcomes, patient-reported outcomes, neurocognitive outcomes, whole-body MRI, disease biomarkers, and cutaneous neurofibromas. Leaders of the eight working groups were 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.

Financing

Support is provided by a National Cancer Institute grant, “Developing endpoints to facilitate clinical trials in rare diseases,” and the Children’s Tumor Foundation.

Impact/Accomplishment

For a list of REiNS publications, click here

Points of Contact

Scott R. Plotkin, MD, PhD
splotkin@reinscollaboration.org

120 Wall Street, 16th Floor
New York, NY 10005-3904            
1-800-323-7938
info@ctf.org

Sponsors & Partners

Children’s Tumor Foundation

National Cancer Institute


Last Updated: 06/27/2017

The Consortia-pedia Catalogue is a living resource, and we are always adding new consortia. Provide information here about your collaboration to apply to be included in the Catalogue.

All the information contained in the Consortia-pedia was collected from publically available sources. Decisions to include or exclude a particular listing from Consortia-pedia were also made on the basis of publically available information and the criteria outlined in the FAQs. This site is intended to be an objective resource for the community, and inclusion does not constitute or imply endorsement, recommendation, or approval by FasterCures or the Milken Institute.