NINDS expects the clinical research it funds to meet the highest standards of scientific rigor yet, appreciates the burden that extensive data collection puts on investigators and study participants. Further, the Institute leadership recognizes that investigators independently identify data elements and forms for each study, many of which could be common across studies. As part of its effort to facilitate research of the highest quality yet, streamline clinical trials data collection in neurological studies, NINDS initiated a Common Data Element (CDE) project.

The NINDS Common Data Elements website serves as a repository and dissemination tool for all NINDS CDEs for Investigators to utilize for trials being planned, and ongoing research. The website assists NINDS clinical researchers by providing access to NINDS Common Data Elements (CDE), definitions, and sample data collection forms.

Please see below the disease-specific CDEs available:

• General [flyer]
• Amyotrophic Lateral Sclerosis
• Cerebral Palsy
• Chiari I Malformation
• Epilepsy
• Friedreich’s Ataxia
• Headache
• Huntington's Disease
• Mitochondrial Disease
• Multiple Sclerosis
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
• Neuromuscular Diseases
  • Congenital Muscular Dystrophy
  • Duchenne/Becker Muscular Dystrophy
  • Facioscapulohumeral Muscular Dystrophy (FSHD)
  • Myasthenia Gravis
  • Myotonic Dystrophy
  • Spinal Muscular Atrophy
• Parkinson’s Disease
• Spinal Cord Injury
  • Spinal Cord Injury- Pediatric
• Sports-Related Concussion (SRC)
• Stroke
  •   Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage
• Traumatic Brain Injury

Questions about NINDS CDEs?

Contact Carolina Mendoza-Puccini carolina.mendoza-puccini@nih.gov