General
REiNS International Collaboration Poster
REiNS Patient Centered Research Poster
REiNS Patient Engagement - December 2016
REiNS Patient Engagement Teleconference - November 20th, 2017
Working Groups
REiNS Patient Reported Outcome Measures Poster
REiNS Functional Outcomes Measures Poster
REiNS Neurocognitive Outcome Measures Poster
PN3: Volume Segmentation Neck Chest Date 1
PN3: Volume Segmentation Neck Chest Date 2
PN3: Volume Segmentation Neck-Chest Date 3
REiNS Meetings
Hybrid Winter Meeting - December 2022
1. Summarizing key regulatory issues of interest for REiNS
3. FDA Perspective: Approach to Rare Diseases and Use of Natural History Studies
4. Support for developing medicines to address unmet medical needs of patients with a rare disease
6. The natural history of Neurofibromatosis Type 2: National Institutes of Health Cohort
7. Natural History of Schwannomatosis-Related Pain
8. Natural History Study of Cutaneous Neurofibromas In People With NF1
Hybrid Summer Meeting - June 2022
1. Neurocognitive Outcomes Working Group Update
2. REiNS Functional Group Update
3. Imaging Working Group Update
Virtual Winter Meeting - March 2022
Patient Representative Meeting
1. Understanding the Genetic Code and Successful/Unsuccessful Approaches to Gene Directed Therapies
2. A (Very Brief) History of Gene Directed Therapy Trials for Humans
General Meeting
4. Facilitating the Development of Gene Therapy for Conditions that are Less Common
5. Gene Therapy Approaches for the Leukodystrophies
6. Scientific Approaches to Gene Directed Therapies for NF2 and Schwannomatosis
7. Safety Issues of Gene Therapy
9. Gene Directed Therapies: Interactive Exercise
Virtual Summer Meeting - June 2021
2. Developing Endpoints Across Multiple Cognitive Domains
3. Update from the Patient Reported Outcomes Working Group
4. REiNS Patient Representative Group Update
5. REiNS Functional Group Update
6. Identifying Clinical, Genetic, and Radiologic Features Associated with Increased Risk for MPNST
Virtual Winter Meeting - March 2021
1. Developing skeletal outcomes for NF Clinical Trials: Welcome and Direction
2. Techniques and Endpoints for Osteoporosis in NF1
3. Longitudinal Evaluation of Bone Density in Children & Young Adults with Neurofibromatosis Type 1
4. Endpoints for Study of Scoliosis
5. Radiation Risks of Imaging Studies
7. Getting Ahead of the Curve: MRI vs. Radiographs for NF1 Related Scoliosis
8. Dystrophic Scoliosis and NF1: Parent Perspective
9. Patient reported outcomes for NF1-related Scoliosis: domains of interest
Virtual Summer Meeting - June 2020
1. Introduction and REiNS Updates
2. Taking the REiNS: FDA Approval of Selumetinib for NF1
3. Developing Endpoints for Skeletal Manifestations of NF1
4. Developing Endpoints Across Multiple Cognitive Domains
5. Assessing Perceived Disfigurement in NF Clinical Trials
6. Recruiting Patient Representatives to REiNS: Version 2.0
REiNS Winter Meeting - December 2019 (Baltimore, MD)
1. REiNS Functional and PRO Recommendations Applied in NF1 Trials: From Theory to Practice
2. Evaluating the Impact of REiNS on Clinical Trials for NF2 and SWN: 2011 - 2019
3. Clinical Trial Design for Cutaneous Neurofibromas
5. Selumetinib Trial Targeting Cutaneous Neurofibromas: Preliminary Findings and Lessons Learned
6. Proposed Design for an Activity Finding Trial Using Local Therapy
7. Proposed Design for Activity-Finding Trial Using Systemic Therapy for cNF
8. Assessing the Strengths and Weaknesses of the REiNS Patient Representative Program
September 2019 CTF Conference REiNS Session (San Francisco, CA)
1. Reliability of measuring muscle strength using a hand-held dynamometer in NF .pdf
2. Assessing Established PROs for cNFs: Are these Scales Adequate for Clinical Trials?
3. Using Patient Views to Inform the Design of Clinical Trials for cNF
4. Evaluating the REiNS Patient Representative Program
5. REiNS Neurocognitive Update - Preschool Subcommittee and Broader Committee
6. REiNS Patient Reported Outcomes (PRO) Working Group
December 2018 Winter Meeting (Bethesda, MD)
1. Incorporating Biomarkers into Cutaneous Neurofibroma Trials
2. A Regulatory Perspective on Novel Efficacy Endpoints
3. Designing Clinical Trials for Cutaneous Neurofibromas, an Unmet Need for Patients with NF1
4. Measuring Change in Cutaneous Neurofibroma Size - Novel Techniques and Endpoints
5. The Path Traveled: Progress in Developing Therapeutics for Cutaneous Neurofibromas
6. What Constitutes Clinical Benefit for Trials of cNF?
7. Patient Reported Outcomes for Trials of Cutaneous Neurofibromas
8. Ongoing Studies of Cutaneous Neurofibromas: Trial Design and Endpoints
9. Results of a Survey of NF1 Patients Defining Symptom Burden of Cutaneous Neurofibromas
November 2018 CTF Conference REiNS Session (Paris, France)
1. Introduction to 2018 Summer REiNS Meeting - Paris
2. Social Cognition Outcomes Measures
3. Patient Reported Outcomes (PRO) Working Group
4. Combined Whole Body MRI and Tumor Imaging
5. Patient Representative Training
6. Functional Motor Outcome Measures in Adults with NF1
7. Statistical Validation of Skindex Between Two Institutions
8. Translating Patient Views into Global Assessments
May 2018 NF Forum REiNS Session (Atlanta, GA)
1. Patient Engagement in REiNS: Benefits, Challenges, and Opportunities
2. REiNS Patient Representative Training
3. Functional Measurements in Clinical Trials for Plexiform Neurofibromas
4. REiNS Neurocognitive Committee
December 2017 REiNS Working Group Updates (Bethesda, MD)
5. REiNS Visual Outcomes Group
December 2017
Invited Speakers
3. REiNS Patient Representation
5. REiNS Teaching Patient Reps
June 2017
1. REiNS Roadmap for Patient Engagement
2. REiNS Strength Testing in NF
3. REiNS cNF Working Group Update
4. REiNS Preschool Neurocog Update
December 2016
2. REiNS Enhancing Patient Engagement
4. REINS Developing PROS using patient focus groups
REiNS slide template for presentations
REiNS slide template with logo and name_1.pptx
REiNS cover slide template for posting presentations
REiNS cover slide for re-sharing data