Notice2026-08239
Proposed Data Collection Submitted for Public Comment and Recommendations
Primary source
Metadata and text below are from the Federal Register, a public-domain U.S. government work. Always verify the official published version before relying on it for any legal matter.
Published
April 28, 2026
Issuing agencies
Health and Human Services DepartmentCenters for Disease Control and Prevention
Abstract
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 Focus on Advancing Support and Transition with the Fragile X Online Registry With Accessible Database (FAST FORWARD). This surveillance project will allow CDC to better understand health outcomes, educational and social outcomes and gaps in related services (education, work, well-being, etc.), and barriers to and differences in receipt of healthcare and other services among people with fragile X syndrome (FXS).
Full Text
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<title>Federal Register, Volume 91 Issue 81 (Tuesday, April 28, 2026)</title>
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[Federal Register Volume 91, Number 81 (Tuesday, April 28, 2026)]
[Notices]
[Pages 22819-22820]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2026-08239]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
[60Day-26-0179; Docket No. CDC-2026-0694]
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.
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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 Focus on Advancing Support and Transition with the Fragile X
Online Registry With Accessible Database (FAST FORWARD). This
surveillance project will allow CDC to better understand health
outcomes, educational and social outcomes and gaps in related services
(education, work, well-being, etc.), and barriers to and differences in
receipt of healthcare and other services among people with fragile X
syndrome (FXS).
DATES: CDC must receive written comments on or before June 29, 2026.
ADDRESSES: You may submit comments, identified by Docket No. CDC-2026-
0694 by either of the following methods:
[ballot] Federal eRulemaking Portal: <a href="http://www.regulations.gov">www.regulations.gov</a>. Follow
the instructions for submitting comments.
[ballot] 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 <a href="http://www.regulations.gov">www.regulations.gov</a>.
Please note: Submit all comments through the Federal eRulemaking
portal (<a href="http://www.regulations.gov">www.regulations.gov</a>) 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; phone: 404-639-7118; Email:
<a href="/cdn-cgi/l/email-protection#1976747b597a7d7a377e766f"><span class="__cf_email__" data-cfemail="325d5f50725156511c555d44">[email protected]</span></a>.
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
Focus on Advancing Support and Transition with the Fragile X Online
Registry with Accessible Research 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.
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), which 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.
The current information collection request, consistent with
Congressional intent, is to employ clinic-based enrollment of eligible
participants aged 40 years old or younger with full mutation of FXS
that attend the three U.S. clinics funded for this project. Each
participating clinic will recruit a minimum of 200 eligible persons
with
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FXS (approximately 40 per year 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 600 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 Total burden
respondents respondent (in hours) (in hours)
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Parents/Caregivers............ Survey.......... 600 1 1 600
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Total..................... ................ .............. .............. .............. 600
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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. 2026-08239 Filed 4-27-26; 8:45 am]
BILLING CODE 4163-18-P
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