Resources
Presentations
Presentation slides and posters from REiNS biannual meetings and working group sessions.
Copies of presentation slides from REiNS biannual meetings and working group sessions are listed below, grouped by General, Working Groups, and REiNS Meetings (newest first). For questions, contact reinscollaboration@gmail.com.
Summer 2026 Meeting Agenda· June 2026 Summer meeting (Denver, CO)
Evidence-based Consensus-driven Assessment of Outcome Measures for Cutaneous Neurofibromas in NF1
REiNS Cutaneous Neurofibroma group
· June 2026 Summer meeting (Denver, CO)Biomarker Working Group· June 2026 Summer meeting (Denver, CO)
Decentralized Assessment of Hearing Outcomes in NF2-SWN· June 2026 Summer meeting (Denver, CO)
How Perception of Disease Severity Influences Patient Preferences for Gene-Targeted Therapy· June 2026 Summer meeting (Denver, CO)
Recommendations for Computerized Cognitive Assessment Batteries in Neurofibromatosis Clinical Trials· June 2026 Summer meeting (Denver, CO)
REiNS Mini-Symposuim: Patient and Caregiver Structured Review of Clinical Trials for NF1/SWN· June 2026 Summer meeting (Denver, CO)
Update from imaging outcomes working group: Real-world experience with volumetry for plexiform neurofibroma· June 2026 Summer meeting (Denver, CO)
Update from the Patient-Reported Outcomes Working Group: Recommendations for the Assessment of Depression and Anxiety in Neurofibromatosis Clinical Trials· June 2026 Summer meeting (Denver, CO)
Clinical Trial Endpoints for Educational Outcomes· June 2025 Summer Meeting (Washington, D.C.)
The Point of It All: A Deep Dive into Clinical Trial Endpoints· June 2025 Summer Meeting (Washington, D.C.)
Clinical Trial Endpoints for Employment· June 2025 Summer Meeting (Washington, D.C.)
Clinical Trial Endpoints for Independent Living· June 2025 Summer Meeting (Washington, D.C.)
REiNS Winter Meeting 2024 Agenda· December 2024 Winter Meeting (Baltimore, MD)
Data structures and harmonization to facilitate effective AI implementation in NF· December 2024 Winter Meeting (Baltimore, MD)
Neurofibromatosis Information Made Simple· December 2024 Winter Meeting (Baltimore, MD)
Classifying tumors and predicting patients response from the pathology slides· December 2024 Winter Meeting (Baltimore, MD)
AI applications in cutaneous neurofibromas· December 2024 Winter Meeting (Baltimore, MD)
REiNS Summer 2024 Agenda· June 2024 Summer Meeting (Brussels, Belgium)
REiNS 2024 Summer Meeting Welcome and Introduction· June 2024 Summer Meeting (Brussels, Belgium)
REiNS CNF AI Working Group: Automating CNF Outcome Collection using Deep Machine Learning· June 2024 Summer Meeting (Brussels, Belgium)
Phase 2 Decentralized Trial using VIT in Patients with Metastatic or Unresectable MPNST· June 2024 Summer Meeting (Brussels, Belgium)
REiNS 2023 Winter Meeting Welcome and Introduction· December 2023 Winter Meeting (Baltimore, MD)
Understanding decentralized trials: benefits and challenges· December 2023 Winter Meeting (Baltimore, MD)
Decentralized Neurocognitive Trials· December 2023 Winter Meeting (Baltimore, MD)
Biomarkers in decentralized trials· December 2023 Winter Meeting (Baltimore, MD)
REiNS 2023 Summer Meeting Welcome and Introduction· June 2023 Summer Meeting (Scottsdale, AZ)
Opportunities to Engage with FDA· June 2023 Summer Meeting (Scottsdale, AZ)
Prospective Evaluation of Skeletal Disease Manifestations in NF1· June 2023 Summer Meeting (Scottsdale, AZ)
Targeted Therapies Working Group: Patient preference studies for gene-targeted therapy· June 2023 Summer Meeting (Scottsdale, AZ)
Perspectives of Adolescents with NF1 and Cutaneous Neurofibromas· June 2023 Summer Meeting (Scottsdale, AZ)
A core outcome domain set to assess cutaneous neurofibromas related to neurofibromatosis type 1 in clinical trials· June 2023 Summer Meeting (Scottsdale, AZ)
REiNS Patient Representative Membership and Activities· June 2023 Summer Meeting (Scottsdale, AZ)
Updates from the PRO Working Group: An Evaluation of Measures Used to Assess Anxiety and Depression for Individuals with Neurofibromatosis and Schwannomatosis· June 2023 Summer Meeting (Scottsdale, AZ)
Neurocognitive Outcomes Working Group Update: Evaluation of Measures of Intellectual Ability, Memory, Language and Executive Functions· June 2023 Summer Meeting (Scottsdale, AZ)
REiNS Functional Group Update· June 2023 Summer Meeting (Scottsdale, AZ)
1. Summarizing key regulatory issues of interest for REiNS· December 2022 Winter Meeting (Baltimore, MD)
2. What is Required for Drug Approvals in Common and Rare Diseases and How Natural History Studies Can Help· December 2022 Winter Meeting (Baltimore, MD)
3. FDA Perspective: Approach to Rare Diseases and Use of Natural History Studies· December 2022 Winter Meeting (Baltimore, MD)
4. Support for developing medicines to address unmet medical needs of patients with a rare disease· December 2022 Winter Meeting (Baltimore, MD)
5. Regulatory Approval of Selumetinib for NF1 Plexiform Neurofibromas: How Did We Get There & Lessons Learned· December 2022 Winter Meeting (Baltimore, MD)
6. The natural history of Neurofibromatosis Type 2: National Institutes of Health Cohort· December 2022 Winter Meeting (Baltimore, MD)
7. Natural History of Schwannomatosis-Related Pain· December 2022 Winter Meeting (Baltimore, MD)
8. Natural History Study of Cutaneous Neurofibromas In People With NF1· December 2022 Winter Meeting (Baltimore, MD)
9. International Multi-Center Natural History Study of Newly Diagnosed NF1-Associated Non-Optic Pathway Glioma· December 2022 Winter Meeting (Baltimore, MD)
Biomarker Group Update· June 2022 Summer Meeting (Philadelphia, PA)
REiNS Mini-symposium: Consensus meeting to define the minimal set of outcomes to be reported for clinical trials of cutaneous neurofibromas· June 2022 Summer Meeting (Philadelphia, PA)
Neurocognitive Outcomes Working Group Update· June 2022 Summer Meeting (Philadelphia, PA)
REiNS Functional Group Update· June 2022 Summer Meeting (Philadelphia, PA)
Imaging Working Group Update· June 2022 Summer Meeting (Philadelphia, PA)
Welcome Slides· Virtual Winter Meeting - March 2022
A (Very Brief) History of Gene Directed Therapy Trials for Humans· Virtual Winter Meeting - March 2022
Facilitating the Development of Gene Therapy for Conditions that are Less Common· Virtual Winter Meeting - March 2022
Gene Therapy Approaches for the Leukodystrophies· Virtual Winter Meeting - March 2022
Scientific Approaches to Gene Directed Therapies for NF2 and Schwannomatosis· Virtual Winter Meeting - March 2022
Understanding the Genetic Code and Successful/Unsuccessful Approaches to Gene Directed Therapies· Virtual Winter Meeting - March 2022
Safety Issues of Gene Therapy· Virtual Winter Meeting - March 2022
An Ethical Framework for Initiating Human Trials of Gene Directed Therapies in NF: Deciding When? Who? How?· Virtual Winter Meeting - March 2022
Gene Directed Therapies: Interactive Exercise· Virtual Winter Meeting - March 2022
Welcome Slides· Virtual Summer Meeting - June 2021
REiNS Functional Group Update· Virtual Summer Meeting - June 2021
REiNS Functional Group Update· Virtual Summer Meeting - June 2021
Developing Endpoints Across Multiple Cognitive Domains· Virtual Summer Meeting - June 2021
Update from the Patient Reported Outcomes Working Group· Virtual Summer Meeting - June 2021
REiNS Patient Representative Group Update· Virtual Summer Meeting - June 2021
Application of X-ray, MRI, pQCT, and DXA in a Natural History Study of Scoliosis Progression in Children with NF1· Virtual Winter Meeting - March 2021
Developing skeletal outcomes for NF Clinical Trials: Welcome and Direction· Virtual Winter Meeting - March 2021
Dystrophic Scoliosis and NF1: Parent Perspective· Virtual Winter Meeting - March 2021
Endpoints for Study of Scoliosis· Virtual Winter Meeting - March 2021
Getting Ahead of the Curve: MRI vs. Radiographs for NF1 Related Scoliosis· Virtual Winter Meeting - March 2021
Longitudinal Evaluation of Bone Density in Children & Young Adults with Neurofibromatosis Type 1· Virtual Winter Meeting - March 2021
Radiation Risks of Imaging Studies· Virtual Winter Meeting - March 2021
Techniques and Endpoints for Osteoporosis in NF1· Virtual Winter Meeting - March 2021
Patient reported outcomes for NF1-related Scoliosis: domains of interest· Virtual Winter Meeting - March 2021
Taking the REiNS: FDA Approval of Selumetinib for NF1· Virtual Summer Meeting - June 2020
Developing Endpoints for Skeletal Manifestations of NF1· Virtual Summer Meeting - June 2020
Developing Endpoints Across Multiple Cognitive Domains· Virtual Summer Meeting - June 2020
Assessing the Strengths and Weaknesses of the REiNS Patient Representative Program· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Proposed Design for Activity-Finding Trial Using Systemic Therapy for cNF· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Proposed Design for an Activity Finding Trial Using Local Therapy· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Selumetinib Trial Targeting Cutaneous Neurofibromas: Preliminary Findings and Lessons Learned· REiNS Winter Meeting - December 2019 (Baltimore, MD)
REiNS Functional and PRO Recommendations Applied in NF1 Trials: From Theory to Practice· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Evaluating the Impact of REiNS on Clinical Trials for NF2 and SWN: 2011 - 2019· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Clinical Trial Design for Cutaneous Neurofibromas· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Review of Proposed Outcome Measures for cNF: Tumor Size, PROs, and Global Assessment of Change (GAC)· REiNS Winter Meeting - December 2019 (Baltimore, MD)
Assessing Established PROs for cNFs: Are these Scales Adequate for Clinical Trials?· __September 2019 CTF Conference REiNS Session (San Francisco, CA)__
Evaluating the REiNS Patient Representative Program· __September 2019 CTF Conference REiNS Session (San Francisco, CA)__
REiNS Neurocognitive Update - Preschool Subcommittee and Broader Committee· __September 2019 CTF Conference REiNS Session (San Francisco, CA)__
REiNS Patient Reported Outcomes (PRO) Working Group· __September 2019 CTF Conference REiNS Session (San Francisco, CA)__
Reliability of measuring muscle strength using a hand-held dynamometer in NF· __September 2019 CTF Conference REiNS Session (San Francisco, CA)__
Using Patient Views to Inform the Design of Clinical Trials for cNF· __September 2019 CTF Conference REiNS Session (San Francisco, CA)__
2018 REiNS Winter Meeting Survey Results· December 2018 Winter Meeting (Bethesda, MD)
Ongoing studies of cutaneous neurofibromas: trial design and endpoints· December 2018 Winter Meeting (Bethesda, MD)
Patient reported outcomes for trials of cutaneous neurofibromas· December 2018 Winter Meeting (Bethesda, MD)
Results of a survey of NF1 patients defining the symptom burden of cutaneous neurofibromas· December 2018 Winter Meeting (Bethesda, MD)
Incorporating Biomarkers into Cutaneous Neurofibroma Trials· December 2018 Winter Meeting (Bethesda, MD)
A Regulatory Perspective on Novel Efficacy Endpoints· December 2018 Winter Meeting (Bethesda, MD)
Designing Clinical Trials for Cutaneous Neurofibromas, an Unmet Need for Patients with NF1· December 2018 Winter Meeting (Bethesda, MD)
Measuring Change in Cutaneous Neurofibroma Size - Novel Techniques and Endpoints· December 2018 Winter Meeting (Bethesda, MD)
The Path Traveled: Progress in Developing Therapeutics for Cutaneous Neurofibromas· December 2018 Winter Meeting (Bethesda, MD)
What Constitutes Clinical Benefit for Trials of cNF?· December 2018 Winter Meeting (Bethesda, MD)
Combined Whole Body MRI and Tumor Imaging· November 2018 CTF Conference REiNS Session (Paris, France)
Introduction to Paris 2018 “Summer” REiNS meeting· November 2018 CTF Conference REiNS Session (Paris, France)
Patient Reported Outcomes (PRO) Working Group· November 2018 CTF Conference REiNS Session (Paris, France)
Social Cognition Outcomes Measures· November 2018 CTF Conference REiNS Session (Paris, France)
Patient Representative Training· November 2018 CTF Conference REiNS Session (Paris, France)
Functional Motor Outcome Measures in Adults with NF1· November 2018 CTF Conference REiNS Session (Paris, France)
Statistical Validation of Skindex Between Two Institutions· November 2018 CTF Conference REiNS Session (Paris, France)
Translating Patient Views into Global Assessments· November 2018 CTF Conference REiNS Session (Paris, France)
Patient Engagement in REiNS: Benefits, Challenges, and Opportunities· May 2018 NF Forum REiNS Session (Atlanta, GA)
REiNS Patient Representative Training· May 2018 NF Forum REiNS Session (Atlanta, GA)
Functional Measurements in Clinical Trials for Plexiform Neurofibromas· May 2018 NF Forum REiNS Session (Atlanta, GA)
REiNS Neurocognitive Committee· May 2018 NF Forum REiNS Session (Atlanta, GA)
REiNS Introduction· December 2017 — Invited Speakers
REiNS PCORI· December 2017 — Invited Speakers
REiNS Patient Representation· December 2017 — Invited Speakers
REiNS Training Researchers· December 2017 — Invited Speakers
REiNS Teaching Patient Reps· December 2017 — Invited Speakers
REINS Patient Engagement· December 2017 — Invited Speakers
Neurocognitive Outcomes Working Group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
REiNS Disease Biomarkers Working Group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
REiNS functional working group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
REiNS Patient Reported Outcomes (PRO) Working Group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
Tumor Imaging Group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
Visual Outcomes Committee· December 2017 — REiNS Working Group Updates (Bethesda, MD)
Whole Body MRI Working Group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
REiNS cNF Group· December 2017 — REiNS Working Group Updates (Bethesda, MD)
Cutaneous Neurofibroma Working Group· June 2017
Strength testing in NF· June 2017
REiNS Roadmap for Patient Engagement· June 2017
Enhancing Patient Engagement in Neurofibromatosis Clinical Trials· __December 2016__
Patient Engagement: FDA Perspectives and Initiatives· __December 2016__
Patient Priorities: Patients and Caregivers Setting the Agenda· __December 2016__