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 160 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.
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:
- Alzheimer’s disease (AD)
- Cerebral cavernous malformation (CCM)
- Adrenomyeloneuropathy (AMN)
- Charcot Marie Tooth (CMT)
- Amyotrophic lateral sclerosis (ALS)
- Crohn’s disease (CD)
- Duchenne muscular dystrophy (DMD)
- Facioscapulohumeral muscular dystrophy (FSHD)
- Spinal muscular atrophy (SMA)
- Fibromyalgia (FM)
- Lung cancer (LC)
- Friedreich’s ataxia (FA)
- Myotonic dystrophy Type 1 (DM-1)
- Huntington’s disease (HD)
- Inclusion body myositis (IBM)
- Myotonic dystrophy Type 2 (DM-2)
- Parkinson’s disease (PD)
- Spinal-bulbar muscular atrophy (SBMA)