2022-15735. 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 information collection, as required by the Paperwork Reduction Act of 1995. This notice invites comment on a proposed information collection project titled School-Based Active Surveillance (SBAS) of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Among Schoolchildren: Phase-2 of the National Roll-Out. This project will expand on the work from the pilot phase and increase the number of local schools, school districts, states and subsequently school nurses involved in active surveillance of chronic conditions, including ME/CFS, using an electronic data collection platform.

DATES:

CDC must receive written comments on or before September 20, 2022.

ADDRESSES:

You may submit comments, identified by Docket No. CDC-2022-0089 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: [phone]; Email: [e-mail].

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 Among Schoolchildren: Phase-2 of the National Roll-Out—New—National Center for Emerging 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 an estimated 836,000 to 2.5 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 up to two in 100 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.

CDC requests OMB approval for an estimated 631 annual burden hours. There is no cost to respondents other than their time to participate.

Estimated Annualized Burden Hours

Type of respondents	Form name	Number of respondents	Number of responses per respondent	Average burden per response (in hours)	Total burden (in hours)
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	12/60	4
Frontline School Nurses	Question Guide for Face-to-Face Evaluation Interviews	20	3	90/60	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 Scientific Integrity, Office of Science, Centers for Disease Control and Prevention.