# Proposed Data Collection Submitted for Public Comment and Recommendations
**AGENCY:**
Centers for Disease Control and Prevention (CDC), Department of Health and Human Services (HHS).
**ACTION:**
Notice with comment period.
**SUMMARY:**
The Centers for Disease Control and Prevention (CDC), as part of its continuing effort to reduce public burden and maximize the utility of government information, invites the general public and other federal agencies the opportunity to comment on a proposed and/or continuing information collection, as required by the Paperwork Reduction Act of 1995. This notice invites comment on a continuing information collection project titled School-Based Active Surveillance (SBAS) of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Among Schoolchildren. This project will expand on the work from previous phases for active surveillance of chronic conditions, including ME/CFS and other infection associated chronic conditions and illnesses (IACCs), using an electronic data collection platform.
**DATES:**
CDC must receive written comments on or before April 13, 2026.
**ADDRESSES:**
You may submit comments, identified by Docket No. CDC-2026-0166 by either of the following methods:
• *Federal eRulemaking Portal:**www.regulations.gov.* Follow the instructions for submitting comments.
• *Mail:* Jeffrey M. Zirger, Information Collection Review Office, Centers for Disease Control and Prevention, 1600 Clifton Road NE, MS H21-8, Atlanta, Georgia 30329.
*Instructions:* All submissions received must include the agency name and Docket Number. CDC will post, without change, all relevant comments to *www.regulations.gov.*
*Please note:* Submit all comments through the Federal eRulemaking portal ( *www.regulations.gov* ) or by U.S. mail to the address listed above.
**FOR FURTHER INFORMATION CONTACT:**
To request more information on the proposed project or to obtain a copy of the information collection plan and instruments, contact Jeffrey M. Zirger, Information Collection Review Office, Centers for Disease Control and Prevention, 1600 Clifton Road NE, MS H21-8, Atlanta, Georgia 30329; Telephone: 404-639-7570; Email: *[email protected].*
**SUPPLEMENTARY INFORMATION:**
Under the Paperwork Reduction Act of 1995 (PRA) (44 U.S.C. 3501-3520), federal agencies must obtain approval from the Office of Management and Budget (OMB) for each collection of information they conduct or sponsor. In addition, the PRA also requires federal agencies to provide a 60-day notice in the *Federal Register* concerning each proposed collection of information, including each new proposed collection, each proposed extension of existing collection of information, and each reinstatement of previously approved information collection before submitting the collection to the OMB for approval. To comply with this requirement, we are publishing this notice of a proposed data collection as described below.
The OMB is particularly interested in comments that will help:
1. Evaluate whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information will have practical utility;
2. Evaluate the accuracy of the agency's estimate of the burden of the proposed collection of information, including the validity of the methodology and assumptions used;
3. Enhance the quality, utility, and clarity of the information to be collected;
4. Minimize the burden of the collection of information on those who are to respond, including through the use of appropriate automated, electronic, mechanical, or other technological collection techniques or other forms of information technology, *e.g.,* permitting electronic submissions of responses; and
5. Assess information collection costs.
**Proposed Project**
School-Based Active Surveillance (SBAS) of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Among Schoolchildren (OMB Control No. 0920-1396, Exp. 4/30/2026)—Revision—National Center for Emerging and Zoonotic and Infectious Disease (NCEZID), Centers for Disease Control and Prevention (CDC).
**Background and Brief Description**
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex, chronic, debilitating multi-system disease, affects up to 3.3 million persons in the United States. However, about 90% of people with ME/CFS have not received an official diagnosis from a healthcare professional. ME/CFS affects between 0.10% and 0.75% of children and adolescents, which often goes undiagnosed by healthcare professionals.
Data on chronic conditions among schoolchildren, such as asthma, has been collected over the years, but there has been little to no emphasis on ME/CFS in the United States. Chronic conditions among school-aged children likely account for a high proportion of chronic school absenteeism and school withdrawal. Conducting active surveillance among students using school nurses could expedite the diagnosis and management of children who present with symptoms commonly seen in ME/CFS. This involves educating school nurses about ME/CFS and its related syndromes, how to best approach parents and guardians when suggesting the diagnosis, and how to support the educational success of students with chronic diseases.
National active surveillance in schools for ME/CFS coupled with education of school nurses about ME/CFS could help improve measuring the burden of ME/CFS in children and provide insights for future plans to improve healthcare in children suffering from ME/CFS and other chronic health conditions. In the next phase of this project, we will expand the active surveillance project beyond the pilot schools to include additional schools in the pilot states as well as in other states. In this national rollout, school nurses will continue to receive education on data collection and ME/CFs as well as technical assistance and training on using the electronic data collection reporting platform.
This project will extend the currently approved data collection to involve more school nurses (respondents). This change will help us to track ME/CFS symptom burden in addition to the ME/CFS prevalence. CDC requests OMB approval for an estimated 631 annualized burden hours. There is no cost to respondents other than their time to participate.
| Type of respondents | Form name | Number of | Number of | Average | Total burden |
| --- | --- | --- | --- | --- | --- |
| Frontline School Nurses | Electronic Platform Quarterly Chronic Absenteeism Data Reporting Form | 20 | 4 | 5 | 400 |
| Frontline School Nurses | Demographic Data Collection Points | 20 | 1 | 6 | 120 |
| Frontline School Nurses | Site Baseline Survey | 20 | 1 | 20/60 | 4 |
| Frontline School Nurses | Question Guide for Face-to-Face Evaluation Interviews | 20 | 3 | 1.5 | 90 |
| State Data Coordinators | Webinar 1 Feedback Form | 50 | 1 | 18/60 | 15 |
| School District Representative | School District Feedback Form | 8 | 1 | 18/60 | 2 |
| Total | | | | | 631 |
Jeffrey M. Zirger,
Lead, Information Collection Review Office, Office of Public Health Ethics and Regulations, Office of Science, Centers for Disease Control and Prevention.