Federal Register #30Day-26-0041

Notice of Review for ALS Registry Information Collection Forms

This notice announces a review of agency forms related to the National Amyotrophic Lateral Sclerosis (ALS) Registry by the Department of Health and Human Services (HHS), specifically through the Agency for Toxic Substances and Disease Registry (ATSDR). - Government Buyer: - Department of Health and Human Services (HHS) - Agency for Toxic Substances and Disease Registry (ATSDR) - Purpose: - Review and update of information collection forms for the National ALS Registry - Updates include revised consent forms, data collection methods, and integration with Unite Genomics for data sharing - Minor terminology changes and revisions to biorepository and research application forms - No procurement of products or services is involved - No OEMs, vendors, or specific product/service requirements are mentioned - Public comments are invited regarding the proposed information collection - Estimated annual burden hours for respondents are outlined - No contract value or period of performance is specified

Description

The Department of Health and Human Services, specifically the Agency for Toxic Substances and Disease Registry (ATSDR), is undergoing a review of certain agency forms as part of the Paperwork Reduction Act process. The notice announces the submission of the National Amyotrophic Lateral Sclerosis (ALS) Registry information collection request to the Office of Management and Budget for review and approval. The ALS Registry collects data on ALS and related motor neuron disorders to develop a population-based registry, including demographic and risk factor information. The notice invites public comments on the proposed information collection and describes updates to consent forms and data collection methods to enhance the registry's usefulness for research.

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