Patient Representatives
Facilitating meaningful engagement of individuals with NF1, NF2, and Schwannomatosis and their family members in REiNS.
Leadership
About This Group
This working group is dedicated to facilitating the engagement of individuals with NF1, NF2, and Schwannomatosis and their family members in REiNS. The first cohort of 30 REiNS patient representatives was selected through an application process in the fall of 2017. This group now serves as a forum to provide feedback to other REiNS working groups on their ongoing projects, and is in charge of organizational planning for continued patient engagement in REiNS, including the recruitment of new patient representatives, education and training of REiNS members, fundraising, and meeting planning. For more information about REiNS, please click here to watch a video. As patients and caregivers of those with Neurofibromatosis 1, Neurofibromatosis 2, or Schwannomatosis, your voices and lived experiences play an important role in determining the direction that research should take. The REiNS (Response Evaluation in Neurofibromatosis and Schwannomatosis) Collaboration is looking for patients and caregivers to help in the fight to cure NF by helping to design clinical trials. This is a chance for you to make a real difference in the future of research for these conditions. A scientific background is not necessary – lived experience with neurofibromatosis or Schwannomatosis is. We welcome people from all backgrounds including people of all genders, races, ethnicities, education level, and disability status. We believe that all voices enrich our research and that diversity maximizes the reach and value of our work. If you are interested in joining the patient representative program, you can learn more about what the role entails here).
REiNS Committee
Managing patient representative recruitment, education (curriculum development), and dissemination (accessible publication summaries) through three active subcommittees.
As patients and caregivers of those with NF1, NF2, or Schwannomatosis, your voices and lived experiences play an important role in determining the direction that research should take. A scientific background is not necessary — lived experience with neurofibromatosis or Schwannomatosis is. We welcome people from all backgrounds including all genders, races, ethnicities, education levels, and disability statuses.
▶ Watch: What is REiNS?Active Subcommittees
Additional Information
Patient Representative Recruitment Subcommittee
CurrentChair: Andrés Lessing, MBA The REiNS Patient Representative Recruitment Subcommittee is focused on planning and implementing the recruitment efforts for the next wave of REiNS patient representatives. This group is looking for current members to help in this upcoming process. Please contact Andrés at alessing@gmail.com if you are interested in participating in this committee.
Patient Representative Education Subcommittee
CurrentChair: Claas Röhl The REiNS Patient Representative Education Subcommittee is focused on developing an educational curriculum for REiNS' patient representatives. This group is working to review and develop both online and in-person sessions and plan to include information about the design and conduct of clinical trials in general, as well as NF/Schwannomatosis specific topics. They are always happy to have new members from the larger working group to help provide input and feedback on our educational plans. Please contact Claas Röhl at claas.roehl@nfkinder.at if you are interested in participating in this committee.
Patient Representative Dissemination Subcommittee
CurrentChair: Miranda McManus, MS The REINS Patient Representative Dissemination Commitee aims to provide accessible summaries of all REiNS publications and REiNS recommended measures. While the primary audience for these efforts are REiNS patient representatives and NF researchers who are not familiar with the group's previous work, we hope these summaries will also be useful to all people with neurofibromatosis and schwannomatosis, especially those who may choose to participate in clinical trials. Please contact Miranda at mcmanusm@charleston.edu if you are interested in participating in this committee.
Working Group Snapshot & Focus Updates
Providing feedback to other REiNS working groups on their ongoing projects. Organizational planning for continued patient engagement including: recruitment of new patient representatives, education and training of REiNS members, fundraising, and meeting planning.
Publications & References
Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement
Vanessa L. Merker, Andrés J. Lessing, Irene Moss, Maureen Hussey, Beverly Oberlander, Traceann Rose, RaquelThalheimer, Tracy Wirtanen, Pamela L. Wolters, Andrea M. Gross, Scott R. Plotkin. Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement. Neurology 2021. Aug 2021; 97 (7 Supplement 1) S4-S14;
Documents & Resources
The REINS education sub-committee together with the Children’s Tumor Foundation Patient Engagement Program compiled this group of informational resources to support you in your role as a patient representative. These resources are available for immediate download, print, or watching via video links. Including the patient's experience in the research process can remarkably improve research and reduce the time it takes for research to become standard practice. We appreciate your passion and commitment.
Become a Patient Representative
We are actively recruiting patient representatives who have NF1, NF2, or Schwannomatosis, or are family members of someone with these conditions. No scientific background is required.