Discretionary Advisory Committee on Heritable Disorders in Newborns and Children; Notice of Meeting, 79471-79472 [2013-31161]

Download as PDF Federal Register / Vol. 78, No. 250 / Monday, December 30, 2013 / Notices patient healthcare coverage (e.g., payer source, type of insurance) and the cost of care. Together, this information will help HAB gain knowledge on the abilities of Part C and Part D grantees to support and track expanded health insurance enrollment for their clients and to adapt to the changing funding landscape. This will inform HAB in the development of future RWHAP policies. In addition, information about data information systems will be used to support the development of a technical assistance tracker for RWHAP grantees to monitor and assess changes in the mix of funding sources used to pay for primary health care and essential support services to PLWHA as the ACA is fully implemented. Information about Part C and Part D grantees’ levels of participation in state-sponsored initiatives will provide some basic information regarding grantees’ abilities to continue to service PLWHA as the ACA is implemented differently among the states. Likely Respondents: The survey will be administered online to program directors from a representative sample of Part C and Part D grantees. Burden Statement: Burden in this context means the time expended by persons to generate, maintain, retain, disclose or provide the information requested. This includes the time 79471 needed to review instructions; to develop, acquire, install and utilize technology and systems for the purpose of collecting, validating and verifying information, processing and maintaining information, and disclosing and providing information; to train personnel and to be able to respond to a collection of information; to search data sources; to complete and review the collection of information; and to transmit or otherwise disclose the information. The total annual burden hours estimated for this ICR are summarized in the table below. Total Estimated Annualized Burden— Hours Form Number of respondents Number of responses per respondent Total responses Average burden per response (in hours) Total burden hours Survey .................................................................................. 120 1 120 4.7 564 Dated: December 23, 2013. Bahar Niakan, Director, Division of Policy and Information Coordination. [FR Doc. 2013–31158 Filed 12–27–13; 8:45 am] BILLING CODE 4165–15–P DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration maindgalligan on DSK5TPTVN1PROD with NOTICES Discretionary Advisory Committee on Heritable Disorders in Newborns and Children; Notice of Meeting In accordance with section 10(a)(2) of the Federal Advisory Committee Act (Pub. L. 92–463, codified at 5 U.S.C. App.), notice is hereby given of the following meeting: Name: Discretionary Advisory Committee on Heritable Disorders in Newborns and Children. Dates and Times: January 16, 2014, 10:30 a.m. to 2:30 p.m., January 17, 2014, 10:00 a.m. to 3:30 p.m. Place: Virtual via Webinar. Status: The meeting is open to the public. For more information on registration and webinar details, please visit the Advisory Committee’s Web site: https://www.hrsa.gov/ advisorycommittees/mchbadvisory/ heritabledisorders. The registration deadline is Wednesday, January 8, 2014, 11:59 p.m. Eastern Standard Time (EST). Purpose: The Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (Committee), as VerDate Mar<15>2010 17:15 Dec 27, 2013 Jkt 232001 authorized by Public Health Service Act (PHS), 42 U.S.C. 217a: Advisory councils or committees, was established to advise the Secretary of the Department of Health and Human Services about the development of newborn screening activities, technologies, policies, guidelines, and programs for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. Note: the Committee’s recommendations regarding additional conditions/ inherited disorders for screening that have been adopted by the Secretary are included in the Recommended Uniform Screening Panel and constitutes part of the comprehensive guidelines supported by the Health Resources and Services Administration. Pursuant to section 2713 of the Public Health Service Act, codified at 42 U.S.C. 300gg–13, non-grandfathered health plans are required to cover screenings included in the HRSA-supported comprehensive guidelines without charging a co-payment, co-insurance, or deductible for plan years (i.e., policy years) beginning on or after the date that is one year from the Secretary’s adoption of the condition for screening. Agenda: The meeting will include: (1) The Nomination and Prioritization Workgroup’s review on X-linked Adrenoleukodystrophy (ALD); (2) an update on Mucopolysaccharidosis type 1 (MPS–1) from the Condition Review Workgroup; (3) an update on the HRSAfunded Newborn Screening Technical Assistance Center; (4) a presentation on the impact of the rapid implementation PO 00000 Frm 00082 Fmt 4703 Sfmt 4703 of electronic health records on the Early Hearing Detection and Intervention State Programs; (5) an introduction to the HRSA-funded Long Term Follow-up Program; and (6) updates from the Committee’s subcommittees and ad-hoc workgroups including Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training subcommittees. Tentatively, the Committee is expected to review and/or vote on whether to refer the ALD nomination to the Condition Review Workgroup. This vote does not involve a proposed addition of a condition to the Recommended Uniform Screening Panel. Agenda items may be subject to change as necessary or appropriate. The agenda, webinar information, Committee Roster, Charter, presentations, and other meeting materials are located on the Advisory Committee’s Web site at https:// www.hrsa.gov/advisorycommittees/ mchbadvisory/heritabledisorders. Public Comments: Members of the public may register to present oral comments and/or submit written comments. All comments, whether oral or written, are part of the official Committee record and will be available on the Committee’s Web site. Advance registration is required to present oral comments. The public comment period is scheduled for the morning of January 16, 2014. Written comments may be emailed to Lisa Vasquez at lvasquez@ hrsa.gov by Wednesday, January 8, 2014, 11:59 p.m. EST. Written comments should identify the individual’s name, address, email, E:\FR\FM\30DEN1.SGM 30DEN1 79472 Federal Register / Vol. 78, No. 250 / Monday, December 30, 2013 / Notices [FR Doc. 2013–31161 Filed 12–27–13; 8:45 am] periodic summaries of proposed projects to be submitted to the Office of Management and Budget (OMB) for review and approval. Written comments and/or suggestions from the public and affected agencies are invited to address one or more of the following points: (1) Whether the proposed collection of information is necessary for the proper performance of the function of the agency, including whether the information will have practical utility; (2) 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) The quality, utility, and clarity of the information to be collected; and (4) Minimize the burden of the collection of information on those who are to respond, including the use of appropriate automated, electronic, mechanical, or other technological collection techniques or other forms of information technology. To Submit Comments and For Further Information: To obtain a copy of the data collection plans and instruments, submit comments in writing, or request more information on the proposed project, contact: Dr. Sarah L. Glavin, Deputy Director, Office of Science Policy, Analysis and Communication, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, 31 Center Drive, Room 2A18, Bethesda, Maryland 20892, or call a non-toll free number (301) 496–1877 or Email your request, including your address to glavins@mail.nih.gov. Formal requests for additional plans and instruments must be requested in writing. BILLING CODE 4165–15–P DATES: telephone number, professional or business affiliation, type of expertise (i.e., parent, researcher, clinician, public health, etc.), and the topic/subject matter of comment. Individuals who wish to make oral comments are required to email Lisa Vasquez at lvasquez@hrsa.gov by Wednesday, January 8, 2014, 11:59 p.m. EST. https://www.blsmeetings.net/ SACHDNC/index.cfm. To ensure that all individuals who have registered to make oral comments can be accommodated, the allocated time may be limited. Individuals who are associated with groups or have similar interests may be requested to combine their comments and present them through a single representative. No audiovisual presentations are permitted. For additional information or questions on public comments, please contact Lisa Vasquez, Maternal and Child Health Bureau, Health Resources and Services Administration; telephone: (301) 443– 1080; email: lvasquez@hrsa.gov. FOR FURTHER INFORMATION CONTACT: Anyone interested in obtaining other relevant information should contact Debi Sarkar, Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18A–19, Parklawn Building, 5600 Fishers Lane, Rockville, Maryland 20857; telephone: (301) 443–1080; email: dsarkar@ hrsa.gov. More information on the Advisory Committee is available at https:// www.hrsa.gov/advisorycommittees/ mchbadvisory/heritabledisorders. Dated: December 23, 2013. Bahar Niakan, Director, Division of Policy and Information Coordination. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health maindgalligan on DSK5TPTVN1PROD with NOTICES Proposed Collection; 60-Day Comment Request: Generic Clearance To Support the Safe to Sleep Campaign at the Eunice Kennedy Shriver National Institute for Child Health and Human Development In compliance with the requirement of Section 3506(c)(2)(A) of the Paperwork Reduction Act of 1995, for opportunity for public comment on proposed data collection projects, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institutes of Health (NIH) will publish SUMMARY: VerDate Mar<15>2010 17:15 Dec 27, 2013 Jkt 232001 Comment Due Date: Comments regarding this information collection are best assured of having their full effect if received within 60 days of the date of this publication. Proposed Collection: Generic Clearance to Support the Safe to Sleep Campaign at the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD), 0925—NEW, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH). Need and Use of Information Collection: This is a request for a new generic clearance that would be used for submissions specific to the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Safe to Sleep (STS) public education campaign. Submissions for PO 00000 Frm 00083 Fmt 4703 Sfmt 4703 the STS campaign will be used to assess the understanding and reach of STS campaign materials and messages, and to monitor and improve campaign activities such as training workshops and overall implementation. The purpose of this information collection is to monitor and modify campaign activities, to plan future campaign activities, to develop messages and materials, and to develop distribution and outreach strategies that are effective at communicating their message to bring about the intended response, awareness, and/or behavioral change for the target audiences. This generic clearance will enable the NICHD to: (1) More efficiently assess the implementation of campaign activities; (2) better understand the target audiences’ knowledge, attitudes, and beliefs toward STS messages and materials; (3) better understand how the campaign activities have influenced the target audiences’ behaviors and practices; and (4) monitor and improve activities such as trainings, and material/message development. Having a way to gather feedback on the STS campaign activities is critical to assessing the reach and effect of campaign efforts. Data collected for the campaign can inform where future STS campaign resources can produce the most meaningful results. Data collected for the STS campaign generic clearance will be used by a number of audiences, including STS campaign staff, NICHD leadership, STS campaign collaborators, Federal Sudden and Unexpected Infant Deaths (SUID)/ Sudden Infant Death Syndrome (SIDS) Workgroup members, SUID/SIDS stakeholders, clinical and maternal/ child health professionals, parents and caretakers, and the general public. These audiences may use the information collections to: (1) Develop new campaign messages, materials, and/ or training curricula; (2) monitor and improve campaign activities; (3) make decisions about campaign activities; (4) inform current campaign activities; and (5) inform and/or change practices and behaviors of program participants. Examples of the types of information collections that could be included under this generic clearance include: Focus groups and in-depth interviews with parents/caregivers and/or health professionals to get feedback on distribution and outreach activities, and/or campaign messages; and Surveys with parents/caregivers and/or health professionals to: (1) assess the usefulness of the new STS campaign materials, including print and on-line materials and a video, (2) track outreach experiences of program participants, (3) assess training participants’ changes in E:\FR\FM\30DEN1.SGM 30DEN1

Agencies

[Federal Register Volume 78, Number 250 (Monday, December 30, 2013)]
[Notices]
[Pages 79471-79472]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: 2013-31161]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Discretionary Advisory Committee on Heritable Disorders in 
Newborns and Children; Notice of Meeting

    In accordance with section 10(a)(2) of the Federal Advisory 
Committee Act (Pub. L. 92-463, codified at 5 U.S.C. App.), notice is 
hereby given of the following meeting:
    Name: Discretionary Advisory Committee on Heritable Disorders in 
Newborns and Children.
    Dates and Times: January 16, 2014, 10:30 a.m. to 2:30 p.m., January 
17, 2014, 10:00 a.m. to 3:30 p.m.
    Place: Virtual via Webinar.
    Status: The meeting is open to the public. For more information on 
registration and webinar details, please visit the Advisory Committee's 
Web site: https://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    The registration deadline is Wednesday, January 8, 2014, 11:59 p.m. 
Eastern Standard Time (EST).
    Purpose: The Discretionary Advisory Committee on Heritable 
Disorders in Newborns and Children (Committee), as authorized by Public 
Health Service Act (PHS), 42 U.S.C. 217a: Advisory councils or 
committees, was established to advise the Secretary of the Department 
of Health and Human Services about the development of newborn screening 
activities, technologies, policies, guidelines, and programs for 
effectively reducing morbidity and mortality in newborns and children 
having, or at risk for, heritable disorders. Note: the Committee's 
recommendations regarding additional conditions/inherited disorders for 
screening that have been adopted by the Secretary are included in the 
Recommended Uniform Screening Panel and constitutes part of the 
comprehensive guidelines supported by the Health Resources and Services 
Administration. Pursuant to section 2713 of the Public Health Service 
Act, codified at 42 U.S.C. 300gg-13, non-grandfathered health plans are 
required to cover screenings included in the HRSA-supported 
comprehensive guidelines without charging a co-payment, co-insurance, 
or deductible for plan years (i.e., policy years) beginning on or after 
the date that is one year from the Secretary's adoption of the 
condition for screening.
    Agenda: The meeting will include: (1) The Nomination and 
Prioritization Workgroup's review on X-linked Adrenoleukodystrophy 
(ALD); (2) an update on Mucopolysaccharidosis type 1 (MPS-1) from the 
Condition Review Workgroup; (3) an update on the HRSA-funded Newborn 
Screening Technical Assistance Center; (4) a presentation on the impact 
of the rapid implementation of electronic health records on the Early 
Hearing Detection and Intervention State Programs; (5) an introduction 
to the HRSA-funded Long Term Follow-up Program; and (6) updates from 
the Committee's subcommittees and ad-hoc workgroups including 
Laboratory Standards and Procedures, Follow-up and Treatment, and 
Education and Training subcommittees. Tentatively, the Committee is 
expected to review and/or vote on whether to refer the ALD nomination 
to the Condition Review Workgroup. This vote does not involve a 
proposed addition of a condition to the Recommended Uniform Screening 
Panel.
    Agenda items may be subject to change as necessary or appropriate. 
The agenda, webinar information, Committee Roster, Charter, 
presentations, and other meeting materials are located on the Advisory 
Committee's Web site at https://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Public Comments: Members of the public may register to present oral 
comments and/or submit written comments. All comments, whether oral or 
written, are part of the official Committee record and will be 
available on the Committee's Web site. Advance registration is required 
to present oral comments. The public comment period is scheduled for 
the morning of January 16, 2014. Written comments may be emailed to 
Lisa Vasquez at lvasquez@hrsa.gov by Wednesday, January 8, 2014, 11:59 
p.m. EST. Written comments should identify the individual's name, 
address, email,

[[Page 79472]]

telephone number, professional or business affiliation, type of 
expertise (i.e., parent, researcher, clinician, public health, etc.), 
and the topic/subject matter of comment. Individuals who wish to make 
oral comments are required to email Lisa Vasquez at lvasquez@hrsa.gov 
by Wednesday, January 8, 2014, 11:59 p.m. EST. https://www.blsmeetings.net/SACHDNC/index.cfm. To ensure that all individuals 
who have registered to make oral comments can be accommodated, the 
allocated time may be limited. Individuals who are associated with 
groups or have similar interests may be requested to combine their 
comments and present them through a single representative. No 
audiovisual presentations are permitted. For additional information or 
questions on public comments, please contact Lisa Vasquez, Maternal and 
Child Health Bureau, Health Resources and Services Administration; 
telephone: (301) 443-1080; email: lvasquez@hrsa.gov.

FOR FURTHER INFORMATION CONTACT: Anyone interested in obtaining other 
relevant information should contact Debi Sarkar, Maternal and Child 
Health Bureau, Health Resources and Services Administration, Room 18A-
19, Parklawn Building, 5600 Fishers Lane, Rockville, Maryland 20857; 
telephone: (301) 443-1080; email: dsarkar@hrsa.gov.
    More information on the Advisory Committee is available at https://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

    Dated: December 23, 2013.
Bahar Niakan,
Director, Division of Policy and Information Coordination.
[FR Doc. 2013-31161 Filed 12-27-13; 8:45 am]
BILLING CODE 4165-15-P
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