ATSDR Seeks Input on ALS Registry Form Updates
Published Date: 5/5/2026
Notice
Summary
The Agency for Toxic Substances and Disease Registry (ATSDR) is asking for public feedback on their ALS Registry form to make sure it’s useful and not too much work for people to fill out. They’re giving everyone 30 more days to share thoughts before final approval. This helps keep the process smooth and cost-effective while supporting important health research.
Analyzed Economic Effects
4 provisions identified: 1 benefits, 2 costs, 1 mixed.
Estimated Annual Burden Hours Reported
CDC/ATSDR requests OMB approval for an estimated 1,757 annual burden hours for the revised National ALS Registry collection and states there are no respondent costs other than their time. The OMB Control No. is 0923-0041 with an expiration date of 05/31/2026.
Optional Unite Genomics Data Sharing
Persons who enroll in the National ALS Registry will have the option to share personal health-history information with ATSDR via an integration between the Registry portal and a third-party platform called Unite Genomics. ATSDR says this change will not impact the estimated burden hours for respondents.
Genomic Consent and Cell Line Language
ATSDR updated the ALS Biorepository premortem patient consent forms to add language describing genomic data sharing and the associated risks, and to clarify limits on establishment or commercial use of cell lines. These changes were approved by the organization's IRB and are part of the PRA revision package.
Research Application: Samples, Prices, Part E
ATSDR revised the ALS research application materials to add biospecimen sample and aliquot sizes in Part B, to add a postmortem sample and an associated price in Part C, and to create a new Part E for researchers requesting changes to a previously approved application. Researchers seeking data or specimens will use the updated application and encounter listed sample sizes and (where indicated) prices.
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