Reliable Expertise

Experience matters. Getting good neurocognitive data is hard. Shapiro & Delaney specialize in the difficult task of assessing outcomes in the changing, developing child in rare disease populations. 

Protocol Development

Our knowledge of the unique characteristics of each rare disease, together with a nuanced understanding of available cognitive assessments provide the foundation for the accurate measurement of outcomes. The patient’s age, disease stage, functional domains needing assessment, and worldwide cultural differences all factor into the appropriate selection and implementation of measures. Beyond direct cognitive evaluations, we have expertise in patient/caretaker reported endpoints and can provide invaluable assistance regarding associations with surrogate markers.

Each study is different; we carefully consider your needs, site locations, specific population and patient size with an eye for strong data and accurate results.


Tester Training

Are your sites ready to gather the best data possible? We go around the world to make sure your assessors are ready. Our hands-on personal approach ensures they will be. We go beyond the training manuals and generic videos to work one-on-one with assessors, preparing them for a unique rare-disease patient population. Studies benefit from our firsthand and vast experience in the disease area, scale use, and clinical trial experience in an academic setting. Quality control improves when your sites have a partner helping them eliminate the guesswork.

Our personal approach strengthens your results. 



Cognitive data review, case report form development, quality control...our diligence and expertise lend reliable quality to a study. 


Other Ways We Can Help
From collaborating with patient advocacy groups to review of regulatory submissions or assisting you in the development of new and disease specific measures, we lend our years of experience to help you with your study or research. Reach out to us - we would like to hear about your project.