National Danish Database Helps Predict Amyotrophic Lateral Sclerosis Cases

Neurology-focused researchers in Denmark were able to obtain data from the Danish National Patient Registry (DNPR) for all adult (> 17 years) patients registered with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease or motor neuron disease, a rare, fatal, and progressive neurodegenerative disorder that affects the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing in Denmark between 1987 and 2022 (median population of 4.2 million during the study period). The study team randomly selected adult patients living in the North Denmark Region and Central Denmark Region (median population 1.4 million), with a primary discharge diagnosis code of ALS, diagnosed at three departments of neurology. The study’s authors retrieved and reviewed medical records and estimated the positive predictive value (PPV) of the ALS diagnosis.  The authors of this study, represented by Lotte Sahin Levison, PhD Department of Neurology, Aarhus University Hospital, found a high positive predictive value (PPV) of primary diagnostic codes for ALS from Danish departments of neurology, evidencing robust validity.

Sahin Levison and colleagues report the DNPR turns out to be a significant source of data, identifying 5679 patients. From the validation cohort of 300 patients, the study team  retrieved 240 (80%) medical records, confirming 215 ALS diagnoses along the way.  The senior investigator overlooking the study was Henning Andersen, Clinical Professor and Chair, Department of Clinical Medicine—The Department of Neurology.