Our Research Roadmap
Our Mission
Our mission is to assemble the largest patient-driven data and biosample resource to date to uncover the answers needed to further advancements in diagnosis, treatment and prevention of brain inflammation and mental health. Research has been underrepresented in this area and no long-term, real-world study has been done to track individuals suffering from brain inflammation and mental health issues. The Unhide™ Project is leading the charge to change that.
Researcher-level
Differential diagnoses of patients with neuroinflammatory diseases and the development of neuroinflammatory signatures through biomarker data and clinical markers.
Biomarker data
Improving access to biomarker data, through investigation of what biomarker data suggest for a neuroinflammatory diagnosis and the establishment of healthcare provider guidelines to appropriately order and interpret lab tests, for the following signatures:
- Clinical lab “signatures”
- Autoantibody signatures
- Cytokine signatures
- Combination signatures of the above
- Basic research – additional pathophysiological mechanisms and biomarker signatures, with a preference for those addressed by existing agents that can be repurposed
- Development of diagnostic tools and scales
Clinical markers of differential diagnoses
- Symptom/sign clusters, including existence at any time, severity, and episodicity
- Comorbidities/family history/demographics
- Longitudinal history (associations between symptoms and events)
Recording and managing burden of disease and associated impacts on individuals and families.
Quantification of burden of disease
- Quantification of disease burden and strongest drivers of decrease in function, caregiver stress, healthcare utilization
Social impacts
- Pharmacoeconomics to support cost-effectiveness of therapies
- Orphan disease designations
- Surveillance studies using other database along with IPEP-signatures to identify macro-epidemiological trends, like changes over time, geographic and socioeconomic trends, etc.
- Programs to enhance recruitment & retention of healthy controls
Understanding experiences as reported by patients, promoting proof-of-concept prospective clinical studies, and developing and validating animal models to support clinical studies for various types of therapies and patient self-care.
Therapies
Prescription medical therapies
Supportive professional therapies
Surgical therapies
Self-care through lifestyle actions and supplements
Understanding risk factors and triggers of symptom onset associated with development of neuroinflammatory diseases.
Genetic risk factors
Understanding genetic associations with diagnosis and clinical traits
Demographic/clinical risk factors
Understanding what demographic, clinical, or lifestyle factors are associated with development of or resistance to disease
Triggers of symptom onset
Lifestyle modifications to reduce triggers & impacts
Medical interventions to reduce triggers & impacts
Overall
Development and validation of animal models to support clinical studies
How does this affect me?
Our research roadmap on the individual level is based on patient-driven longitudinal data.
Differential diagnosis of patients with neuroinflammatory diseases and the development of neuroinflammatory signatures.
Biomarker data
Increasing accessibility to biomarker data by helping patients know what biomarker data suggest neuroinflammatory disease and how to order appropriate lab tests for the following signatures:
- Clinical lab “signatures”
- Autoantibody signatures
- Cytokine signatures
Clinical markers of differential diagnoses
- Comorbidities/family history/demographics
- Longitudinal history – associations between symptoms and events
Recording and managing burden of disease and associated impacts on individuals and families.
Quantification of burden of disease
- Functional (physical, mental, cognitive, and/or behavioral) impacts
- Family impacts
Managing impacts
- Record-keeping and case-making in support of insurance claims
- Record-keeping and case-making in support of HCP understanding/guidance
- Record-keeping and case-making in interactions with schools and employers
- Managing stress in the family
- Building community
What’s going on and how long will it last? Understanding condition/s, identifying promising therapies, and preventing additional episodes
Symptoms
- Physical signs and symptoms
- Psychological symptoms
- Cognitive symptom
Therapies
- Prescription medical therapies
- Supportive professional therapies
- Surgical therapies
Self-care through lifestyle actions and supplements
Understanding risk factors and triggers of symptom onset associated with the development of neuroinflammatory diseases.
Genetic risk factors
Demographic/clinical risk factors
Triggers of symptom onset
- Lifestyle modifications to reduce triggers & impacts
- Medical interventions to reduce triggers & impacts
