Longitudinal Study of Cognitive Function in ALS


Background:
Better treatments for ALS will come from better understanding of the causes. Recently, an overlap with ALS and other neurodegenerative disorders, particularly cognitive changes have been increasingly recognized in ALS. Cognitive changes can affect behavior, function and language but the type, occurrence, and best treatment options are unknown. These changes have both preceded and followed the diagnosis of ALS. Cases of ALS and cognitive change existing together usually show inclusions, or abnormal structures, in the motor neurons as well as in the frontal and temporal lobes of the brain. However, the prevalence and implication of cognitive changes occurring along with ALS has not been determined. Better understanding of the co-occurence of ALS and cognitive change may provide information on the points of overlap of neurodegenerative disorders.

Goals:

  • To develop a cognitive screen or series of questions that can be used to help identify patients prone to cognitive changes.
  • To better understand the co-occurrence of ALS and cognitive function changes.
  • To conduct a large longitudinal study to define the range and clinical implications of cognitive function changes in ALS.

Study Design:
Consecutive patients, seen in the ALS multi-disciplinary care center, will be asked to participate. The questionnaire, given at three month intervals, will include verbal fluency tests, word association and generation exercises as well as memory, visual and spatial tests, and tools to measure focus, planning and organization ability. These tests will be given in the ALS center and used to determine the presence of cognitive changes in ALS patients. In addition, questionnaires that will appraise the behavioral symptoms of the patient will be given to the caregiver.

Reimbursement:
Patients and caregivers will each receive $30 for the first visit, $40 for the second and $50 for the third visit (if applicable).

Importance:
This study will help identify patients prone to cognitive changes and improve our understanding of how to treat these impairments in ALS. Better understanding of the overlap of cognitive changes and ALS may provide important clues to the cause of the diseases. Clinical research is entirely dependent upon the participation of patients. By participating, patients take a difficult situation and make a meaningful contribution to our common goal. Our research and future patients with ALS will benefit from your dedicated participation.

Please contact Kate Bednarz: keb2114@columbia.edu and phone number (212) 305-2027