CHeT Outcomes
The CHeT Outcomes team specializes in the development and validation of highly sensitive disease-specific, patient-reported and caregiver-reported outcome measures for use in therapeutic trials and FDA drug-labeling claims. Our group has developed and individually validated more than 200 disease-specific instruments and over 1000 subscales that quantify symptomatic disease burden during clinical trials. These instruments are capable of reliably measuring how a patient feels and functions, can reduce sample size requirements, are highly recommended by the NIH’s common data elements initiative, and are designed to detect meaningful changes in health prior to traditional and generic outcome measures.
Our group will collaborate with you to develop and fully validate a disease-specific outcome measure for any disease, and we provide consultation regarding outcome measure selection, use, optimization, and analysis. If you would like more information about how you can obtain a license to use our health indexes in your study, please contact HealthIndexes@chet.rochester.edu
Our Instruments
Our instruments measure the multifaceted, patient-perceived disease burden in individual diseases. Our team of epidemiologists, biostatisticians, qualitative researchers, patient advocates, linguists, computer programmers, outcomes researchers, and physicians has developed patient-reported and caregiver-reported outcome measures for adult and pediatric populations, including instruments for the following diseases:
- Friedreich’s ataxia (FA)
- Huntington’s disease (HD)
- *Integral in obtaining FDA drug approval
- Inclusion body myositis (IBM)
- Lung cancer (LC)
- Myotonic dystrophy (DM, MDHI)
- *NIH gold standard for therapeutic trials
- Parkinson’s disease (PD)
- Spinal muscular atrophy (SMA)
- Spinal-bulbar muscular atrophy (SBMA)
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