ALS Demographics and baseline data

The ALS Demographics and Baseline Data dataset contains person-level clinical and demographic information on patients with amyotrophic lateral sclerosis (ALS), collected through routine healthcare at the CRESLA Center – University of Turin (UNITO, https://www.cresla.unito.it/home). The dataset includes variables grouped into several domains, such as demographic data and medical history including comorbidities, ALS diagnostic and family history and additional clinical information relevant to ALS management and progression. Demographic and clinical variables in UNITO's ALS dataset are included in the Piemonte and Valle d’Aosta Registry for Amyotrophic Lateral Sclerosis (PARALS, Chiò et al., 2017). This registry was established in 1995 to assess the epidemiology of the disease in two regions of Northwestern Italy. The registry is still active and, over time, has used the same method of patient ascertainment. UNITO's ALS Demographics and Baseline Data contains baseline and non-longitudinal variables. This Zenodo record does not provide access to the individual-level dataset. Instead, it offers documentation designed to support FAIR description and internal reuse within the HEREDITARY Horizon Europe project. This includes a structured data dictionary and the associated data access policy. Please refer to the data access policy for information on how to request access to the sensitive dataset.