Agency Forms Undergoing Paperwork Reduction Act Review

Issuing agencies

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<title>Federal Register, Volume 91 Issue 210 (Monday, November 2, 2026)</title>
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[Federal Register Volume 91, Number 210 (Monday, November 2, 2026)]
[Notices]
[Pages 68957-68958]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2026-22329]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-26-0179]


Agency Forms Undergoing Paperwork Reduction Act Review

    In accordance with the Paperwork Reduction Act of 1995, the Centers 
for Disease Control and Prevention (CDC) has submitted the information 
collection request titled ``Focus on Advancing Support and Transition 
with the Fragile X Online Registry with Accessible Database (FAST 
FORWARD)'' to the Office of Management and Budget (OMB) for review and 
approval. CDC previously published a ``Proposed Data Collection 
Submitted for Public Comment and Recommendations'' notice on April 28, 
2026, to obtain comments from the public and affected agencies. CDC 
received two related to the previous notice. This notice serves to 
allow an additional 30 days for public and affected agency comments.
    CDC will accept all comments for this proposed information 
collection project. The Office of Management and Budget is particularly 
interested in comments that:
    (a) 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;
    (b) Evaluate the accuracy of the agencies estimate of the burden of 
the proposed collection of information, including the validity of the 
methodology and assumptions used;
    (c) Enhance the quality, utility, and clarity of the information to 
be collected;
    (d) 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 submission of responses; and
    (e) Assess information collection costs.
    To request additional information on the proposed project or to 
obtain a copy of the information collection plan and instruments, call 
(404) 639-7570. Comments and recommendations for the proposed 
information collection should be sent within 30 days of publication of 
this notice to <a href="http://www.reginfo.gov/public/do/PRAMain">www.reginfo.gov/public/do/PRAMain</a>. Find this particular 
information collection by selecting ``Currently under 30-day Review--
Open for Public Comments'' or by using the search function. Direct 
written comments and/or suggestions regarding the items contained in 
this notice to the Attention: CDC Desk Officer, Office of Management 
and Budget, 725 17th Street NW, Washington, DC 20503 or by fax to (202) 
395-5806. Provide written comments within 30 days of notice 
publication.

Proposed Project

    Focus on Advancing Support and Transition with the Fragile X Online 
Registry with Accessible Database (FAST FORWARD)--New--National Center 
on Birth Defects and Developmental Disabilities (NCBDDD), Centers for 
Disease Control and Prevention (CDC).

Background and Brief Description

    Fragile X Syndrome (FXS) is a genetic disorder caused by changes in 
a gene called fragile X messenger ribonucleoprotein 1 (FMR1). FMR1 
usually makes a protein called Fragile X Messenger Ribonucleoprotein 
(FMRP) that is needed for brain development. People with FXS make 
little or no FMRP. FXS is the most prevalent known cause of inherited 
intellectual disability and the most common monogenic cause of autism. 
Physical features of FXS include a narrow face with prominent jaw and 
forehead and large ears. Medical features can include dental crowning, 
otitis media, sinus infections, sleep disorder, and strabismus; 
developmental features can include intellectual disability, motor 
delays, poor eye contact, repetitive behaviors, seizure disorder, 
speech-language disorder, and symptoms of attention deficit 
hyperactivity disorder. FXS is typically diagnosed in early childhood 
when physical, medical, and developmental features are more recognized. 
It is estimated that one in 7,000 males and one in 11,000 females have 
FXS.

[[Page 68958]]

    The proposed data collection builds on and improves upon four 
previous CDC-funded data collection efforts focused on FXS. The first 
project (CDC-RFA-DD-07-003; 2008-2011) piloted an infrastructure to 
conduct data collection on people with FXS across multiple sites. The 
second project (CDC-RFA-DD-11-007; 2011-2015) developed and piloted the 
infrastructure for a registry and for longitudinal data collection. The 
third project (CDC-RFA-DD-15-003; 2015-2020) established the Fragile X 
Online Registry With Accessible Research Database (FORWARD), and the 
fourth project (CDC-RFA-DD-21-002; 2021-2026), which extended FORWARD 
to include Multiple Assessments for Research Characterization (FORWARD-
MARCH) built on the foundation of the first two projects and continued 
data collection to conduct analyses to better characterize the natural 
history of FXS and meaningful outcome measures to improve the lives of 
people with FXS.
    Congressional Language accompanying the 2026 Consolidated 
Appropriations Act funding for CDC's FXS activities encourages CDC to 
support additional strategies to promote earlier identification of 
children with FXS, to ensure populations with FXS conditions are being 
properly diagnosed and are made aware of available medical services, 
and support people with FXS and associated conditions and disorders 
across the lifespan.
    This information collection request (ICR), consistent with 
Congressional intent, is developed to employ clinic-based enrollment of 
eligible participants aged 40 years old or younger with full mutation 
of FXS that attend clinics affiliated with the three U.S. sites funded 
for this project. Each participating clinic will recruit a minimum of 
200 eligible persons with FXS for a total of 600 across all three 
sites. Information will be collected on diagnosis, co-occurring 
conditions and behaviors, communication, adaptive abilities, healthcare 
utilization and service needs, education, transition planning and 
experience, activities and social participation, future planning, 
caregiver supports, demographics, participant strengths, and other 
topics consistent with the goals of the project. Data will be collected 
through online caregiver surveys.
    CDC requests OMB approval for an estimated 200 annual burden hours. 
There are no costs to respondents other than their time to participate.

                                        Estimated Annualized Burden Hours
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                                                                                    Number of     Average burden
         Type of respondents                   Form name            Number of     responses per    per response
                                                                   respondents      respondent      (in hours)
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Parents/Caregivers...................  Survey..................             200                1               1
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Jeffrey M. Zirger,
Lead, Information Collection Review Office, Office of Public Health 
Ethics and Regulations, Office of Science, Centers for Disease Control 
and Prevention.
[FR Doc. 2026-22329 Filed 10-30-26; 8:45 am]
BILLING CODE 4163-18-P


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