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.
Your PRIA Score
Personalized for You
How does this regulation affect your finances?
Sign up for a PRIA Policy Scan to see your personalized alignment score for this federal register document and every other regulation we track. We analyze your financial profile against policy provisions to show you exactly what matters to your wallet.
Key Dates
Department and Agencies
Related Federal Register Documents
2026-05164 — Nominations for Substances To Be Evaluated for Toxicological Profile Development
The Agency for Toxic Substances and Disease Registry (ATSDR) wants your help picking which chemicals to study next for health risks. Anyone—whether you're part of the public, a government group, or a private organization—can suggest substances by May 18, 2026. This is your chance to shape future safety reports that protect people and the environment, with no cost to submit your ideas!
2025-23599 — Proposed Data Collection Submitted for Public Comment and Recommendations
The Agency for Toxic Substances and Disease Registry wants your thoughts on their plan to keep collecting info about people with ALS, a serious disease. This helps them understand how many people have ALS and what might cause it. If you want to share your opinion, you have until February 20, 2026, to comment—no money changes, just a chance to help shape the data collection.
2025-10624 — Agency Forms Undergoing Paperwork Reduction Act Review
The Agency for Toxic Substances and Disease Registry (ATSDR) is asking for public feedback on their forms used to investigate exposure to harmful substances. They want to make sure the forms are useful, clear, and not too much work for people to fill out. You’ve got 30 days from June 11, 2025, to share your thoughts—this helps keep things smooth and cost-effective for everyone involved!
2026-10050 — Patient Protection and Affordable Care Act, HHS Notice of Benefit and Payment Parameters for 2027; and Basic Health Program
Starting in 2027, health insurance plans on federal and state marketplaces will see new rules to make coverage fairer and easier to use. These changes affect insurance companies, agents, and people buying plans, including new fees, penalties, and better protections for those with hardships. Expect updates on plan quality, dental coverage limits, and longer-term catastrophic plans, all aiming to keep your health coverage solid and affordable.
2026-09383 — Restoring Flexibility To Support Head Start Program Access
The government wants to give Head Start programs more freedom by removing some strict rules about staff wages and benefits. This change aims to save over $2 billion and help programs serve more kids better. If you want to share your thoughts, make sure to comment by June 11, 2026!
2026-09382 — Restoring Flexibility in the Child Care and Development Fund (CCDF)
Starting July 13, 2026, states and territories get more freedom in running the Child Care and Development Fund (CCDF). This means they no longer have to limit family co-pays to 7% of income or follow strict rules on paying child care providers. These changes cut red tape and could save money, making it easier to support families and child care programs.
Previous / Next Documents
Previous: 2026-08663 — Endangered and Threatened Species; Initiation of a Status Review for the Rice's Whale and Request for Information
NOAA is kicking off a fresh checkup on the Rice's whale to see if it still needs protection as an endangered species or if its status should change. They want anyone with new info about these rare whales to share it by July 6, 2026. This review helps make sure the Rice's whale gets the right kind of care and attention to keep it safe in the wild.
Next: 2026-08667 — Agency Forms Undergoing Paperwork Reduction Act Review
The CDC is asking for your thoughts on a new form about ingredients added to cigarettes. They want to make sure the form is useful, clear, and not too much work to fill out. If you have ideas or concerns, you’ve got 30 days to share them before the form gets final approval—no cost changes yet, just a chance to speak up!