InsightLab
Research-to-real-life learning for neurocomplex communities.
InsightLab is our learning hub where patient stories, clinical insight, and emerging research come together. We focus on complex brainstem, spinal, and connective-tissue conditions—and the musicians, clinicians, caregivers, and communities affected by them.
InsightLab is for education and advocacy only. It does not replace medical advice, diagnosis, or treatment. Please consult your own providers about personal medical decisions.
Curated research insights (plain-language)
Case-informed learning (responsibly framed)
Definitions and explainers for complex terms
Practical tools: visit prep, tracking, question lists
Evidence notes: what’s established vs. emerging vs. uncertain
Education and navigation support only—not medical advice, diagnosis, or treatment.
What you’ll find
Who InsightLab Serves
Patients, Families, & Disabled Musicians
You’ll find: symptom overviews, question prompts for appointments, explainer graphics, and stories that make you feel less alone.
Clinicians, Therapists, & Researchers
You’ll find: concise literature reviews, prevalence data, proposed rehab trials, and patient-generated questions that can inform your practice or research.
Current Focus Series
Brainstem & Hypermobility Series
Prevalence, upper-cervical instability, and what current research still can’t tell us—through the lens of lived experience.
Musicians, Spine, and Nerves
How repetitive strain, hypermobility, and delayed diagnosis reshape careers—and what adaptive artistry can teach medicine.
Systems & Dismissal (future)
How labels like “functional” or “psychogenic” shape care pathways, and what patients say they need instead.
Prevalence, Hypermobility & Cervical Instability: What We Know—and Still Don’t (Part 1)
EDS and hypermobility aren’t as rare as people think—and for some, the issue isn’t “just flexibility” but instability at the top of the spine affecting the brainstem. This InsightLab piece explains the science in plain language.
Research & Projects
Some InsightLab pieces grow into formal projects. Here’s how we’re working with clinicians, therapists, and researchers to turn questions into studies and better care.
Story-Driven Case Series
Partnering with clinicians who are willing to document complex cases where patient narratives prompted a change in workup or treatment.
Media & Data Collaboration
Exploring collaboration with existing resources (like Neurospine Connections) to combine their literature library with our lived-experience narratives and survey data.
UCI / Brainstem Rehab Pathways (Concept Stage)
Based on repeated patient stories of delayed diagnosis and severe upper-cervical instability, we’re outlining potential feasibility studies on neuroplasticity-informed rehab protocols.
How We Handle Stories & Data
We obtain consent before sharing identifiable stories.
We anonymize details when needed and never share medical records on the site.
InsightLab is not IRB-approved research by default; any formal study will go through appropriate review and be clearly labeled.
Questions about ethics or research participation? Email research@inclusivibe.org