Research Initiative

Global Clinical Commons

Building the world's largest dataset on rejection sensitivity in ADHD through ethical, privacy-preserving collaboration between clinics worldwide.

Our Vision

RSD has been described by clinicians for decades, but we've lacked the systematic measurement tools needed to study it properly. By creating a shared infrastructure for assessment, we can finally build the evidence base that RSD deserves.

Our vision is a Global Clinical Commons — a collaborative network of clinics contributing anonymized data to advance understanding of rejection sensitivity in ADHD. Every assessment contributes to norms, informs cut-offs, and helps identify what works for different patient profiles.

This is not about extracting data from clinics. It's about building something together that benefits everyone — clinicians, researchers, and most importantly, patients.

Core Principles

Privacy First
No personally identifiable information is ever collected. Patients are identified only by anonymous system IDs.
Clinic Ownership
Clinics own their data. Research sharing is always opt-in and can be revoked at any time.
Collective Benefit
Aggregated insights help develop norms and cut-offs that benefit the entire ADHD community.
Open Science
Findings will be published openly. Contributing clinics are acknowledged in publications.

Data Ethics in Detail

What We Collect (if research mode enabled)
  • Age band (e.g., 26-35)
  • Sex (male/female/other/prefer not to say)
  • ADHD status (diagnosed/under assessment/suspected)
  • Country
  • Assessment responses (item-level)
  • Timepoint (baseline/follow-up)
  • Instrument version used
What We Never Collect
  • Names or initials
  • Dates of birth
  • Addresses or postcodes
  • NHS numbers or other identifiers
  • IP addresses linked to patient data
  • Clinic names in research datasets
  • Any information that could identify individuals

Research Roadmap

Our phased approach to building an evidence base for RSD measurement.

Phase 1
Data Collection
In Progress

Building the initial dataset through clinical use. Current focus on reaching sample size targets for psychometric validation.

Key metrics: Target: 500+ assessments across diverse populations

Phase 2
Psychometric Validation

Factor analysis, internal consistency, test-retest reliability. Confirmation or refinement of the six-domain structure.

Key metrics: Factor analysis, Cronbach's alpha, ICC calculations

Phase 3
Normative Development

Development of age-band and sex-stratified norms. Conversion of raw scores to percentiles and T-scores.

Key metrics: Stratified norms, percentile tables, T-score conversions

Phase 4
Cut-off Validation

ROC analysis to establish empirically-derived severity thresholds using clinical anchors.

Key metrics: Sensitivity, specificity, AUC, PPV, NPV

Phase 5
Treatment Response

Analysis of change patterns, identification of treatment responders, domain-level response signatures.

Key metrics: Reliable Change Index validation, minimal clinically important difference

Publication Pathway

All research findings will be published in peer-reviewed journals under open access where possible. Contributing clinics will be acknowledged, and clinic leads who meet authorship criteria will be offered co-authorship on relevant publications.

Planned publications include:

  • Development and initial validation of the RSD-RS
  • Psychometric properties and factor structure
  • Normative data for clinical interpretation
  • Treatment response patterns and predictors
  • Cross-cultural validation studies

Research Advisory Board

We are assembling an advisory board of clinical researchers, psychometricians, and ADHD specialists to guide the validation process. If you're interested in joining or nominating someone, please get in touch.

Advisory Board Positions Open

Join the Global Initiative

Every clinic that joins brings us closer to robust, evidence-based tools for measuring RSD. Be part of building something that benefits the entire ADHD community.