Current GenID Initiatives
Checklist Guide for Selecting Evaluative Outcome Measures
A checklist guide for trialists, regulators, and industry partners to support the selection of appropriate outcome measures for use in genetic ID clinical trials, including guidance on the identification and selection of the outcome concept or domain and criteria to guide the assessment of the measurement properties of the instrument such as validity, reliability, and responsiveness to change.
Research Agenda
A research agenda outlining gaps in existing evaluative outcome measures for use in genetic ID clinical trials
Systematic Review Of Psychometric Properties Of Outcome Measures Used in Clinical Trials With Genetic Neurodevelopmental Disorders And Intellectual Disability
Identifying the most commonly used outcome measures in clinical trials involving individuals with genetic neurodevelopmental disorders and intellectual disability, and systematically evaluating these measures using the COSMIN methodology. This work builds upon prior scoping reviews in this field, advancing the evidence base for selecting robust and meaningful outcome tools.