Proposed Collection; 60-Day Comment Request; The NIH/NCATS GRDRSM, 44185 [2014-17952]
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Federal Register / Vol. 79, No. 146 / Wednesday, July 30, 2014 / Notices
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Dated: July 24, 2014.
Leslie Kux,
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[FR Doc. 2014–17890 Filed 7–29–14; 8:45 am]
BILLING CODE 4164–01–P
DEPARTMENT OF HEALTH AND
HUMAN SERVICES
National Institutes of Health
Proposed Collection; 60-Day Comment
Request; The NIH/NCATS GRDRSM
Program; Global Rare Diseases Patient
Registry Data Repository (GRDR)
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
National Center for Advancing
Translational Sciences (NCATS),
National Institutes of Health (NIH), will
publish 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 on one or more of the
SUMMARY:
best assured of having their full effect if
received within 60 days of the date of
this publication.
Proposed Collection: The NIH/NCATS
GRDRSM Program, 0925–NEW GRDR,
National Center for Advancing
Translational Sciences (NCATS),
National Institutes of Health (NIH).
Need and Use of Information
Collection: The NIH created the GRDR
program https://grdr.ncats.nih.gov an
informatics system and central data
repository, housed at the NCATS/NIH
Center to support and accelerate
research in the cause, diagnosis, and
treatment of rare diseases. The GRDR
program collects a wide range of data
types, including phenotypic, clinical,
and genomic, as well as medical images,
derived from individuals who
participate in rare disease patient
registries, regardless of the source of
funding. The GRDR program provides
the infrastructure to store, search across,
retrieve, and analyze these varied types
of data. This valuable information will
help NIH understand and evaluate the
use of repositories/datasets in the
research community. The GRDR
program will support: (1) Mapping data
to standards; (2) increased visibility for
participating registries; (3) opportunity
for cross-disease research; (4) better and
faster RD clinical research.
OMB approval is requested for 3
years. There are no costs to respondents
other than their time. The total
estimated annualized burden hours are
100.
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)
Ways to enhance the quality, utility, and
clarity of the information to be
collected; and (4) Ways to 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 instuments,
submit comments in writing, or request
more information on the proposed
project, contact Yaffa Rubinstein, Ph.D.,
Office of Rare Diseases Research
(ORDR), National Center for Advancing
Translational Sciences (NCATS),
National Institutes of Health (NIH), 6701
Democracy Boulevard, Room 1004,
Bethesda, Maryland 20892, or call nontoll free number (301) 402–4338, or
Email your request including your
address to yaffa.rubinstein@nih.gov.
Formal requests for additional plans and
instuments must be requested in
writing.
Comment Due Date: Comments
regarding this information collection are
ESTIMATED ANNUALIZED BURDEN HOURS
Number of
respondents
Form name
Type of respondent
Request for access ...........................
Request to submit .............................
Individuals ........................................
Individuals ........................................
Dated: July 17, 2014.
Pamela McInnes,
Deputy Director, NCATS, NIH.
[FR Doc. 2014–17952 Filed 7–29–14; 8:45 am]
BILLING CODE 4140–01–P
mstockstill on DSK4VPTVN1PROD with NOTICES
DEPARTMENT OF HEALTH AND
HUMAN SERVICES
National Institutes of Health
National Heart, Lung, and Blood
Institute; Notice of Closed Meeting
Pursuant to section 10(d) of the
Federal Advisory Committee Act, as
VerDate Mar<15>2010
16:48 Jul 29, 2014
Jkt 232001
1000
100
amended (5 U.S.C. App.), notice is
hereby given of the following meeting.
The meeting will be closed to the
public in accordance with the
provisions set forth in sections
552b(c)(4) and 552b(c)(6), Title 5 U.S.C.,
as amended. The grant applications and
the discussions could disclose
confidential trade secrets or commercial
property such as patentable material,
and personal information concerning
individuals associated with the grant
applications, the disclosure of which
would constitute a clearly unwarranted
invasion of personal privacy.
Name of Committee: National Heart, Lung,
and Blood Institute Special Emphasis Panel;
Ancillary Studies in Clinical Trials.
PO 00000
Frm 00034
Fmt 4703
Sfmt 4703
Number of
responses per
respondent
1
1
Average
burden per
response
(in hours)
5/60
10/60
Total annual
burden hour
83
17
Date: August 22, 2014.
Time: 8:00 a.m. to 5:00 p.m.
Agenda: To review and evaluate grant
applications.
Place: Hilton Garden Inn Washington DC/
Bethesda, 7301 Waverly Street, Bethesda, MD
20814.
Contact Person: Kristen Page, Ph.D.,
Scientific Review Officer, Office of Scientific
Review/DERA, National Heart, Lung, and
Blood Institute, 6701 Rockledge Drive, Room
7185, Bethesda, MD 20892, 301–496–2434,
kristen.page@nih.gov.
(Catalogue of Federal Domestic Assistance
Program Nos. 93.233, National Center for
Sleep Disorders Research; 93.837, Heart and
Vascular Diseases Research; 93.838, Lung
Diseases Research; 93.839, Blood Diseases
and Resources Research, National Institutes
of Health, HHS).
E:\FR\FM\30JYN1.SGM
30JYN1
]]>Agencies
[Federal Register Volume 79, Number 146 (Wednesday, July 30, 2014)]
[Notices]
[Page 44185]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: 2014-17952]
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
Proposed Collection; 60-Day Comment Request; The NIH/NCATS
GRDR\SM\ Program; Global Rare Diseases Patient Registry Data Repository
(GRDR)
SUMMARY: 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 National Center for Advancing
Translational Sciences (NCATS), National Institutes of Health (NIH),
will publish 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 on 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) Ways to enhance the quality, utility, and clarity of the
information to be collected; and (4) Ways to 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 instuments, submit comments in writing,
or request more information on the proposed project, contact Yaffa
Rubinstein, Ph.D., Office of Rare Diseases Research (ORDR), National
Center for Advancing Translational Sciences (NCATS), National
Institutes of Health (NIH), 6701 Democracy Boulevard, Room 1004,
Bethesda, Maryland 20892, or call non-toll free number (301) 402-4338,
or Email your request including your address to
yaffa.rubinstein@nih.gov. Formal requests for additional plans and
instuments must be requested in writing.
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: The NIH/NCATS GRDR\SM\ Program, 0925-NEW GRDR,
National Center for Advancing Translational Sciences (NCATS), National
Institutes of Health (NIH).
Need and Use of Information Collection: The NIH created the GRDR
program https://grdr.ncats.nih.gov an informatics system and central
data repository, housed at the NCATS/NIH Center to support and
accelerate research in the cause, diagnosis, and treatment of rare
diseases. The GRDR program collects a wide range of data types,
including phenotypic, clinical, and genomic, as well as medical images,
derived from individuals who participate in rare disease patient
registries, regardless of the source of funding. The GRDR program
provides the infrastructure to store, search across, retrieve, and
analyze these varied types of data. This valuable information will help
NIH understand and evaluate the use of repositories/datasets in the
research community. The GRDR program will support: (1) Mapping data to
standards; (2) increased visibility for participating registries; (3)
opportunity for cross-disease research; (4) better and faster RD
clinical research.
OMB approval is requested for 3 years. There are no costs to
respondents other than their time. The total estimated annualized
burden hours are 100.
Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
Number of Average burden
Form name Type of Number of responses per per response Total annual
respondent respondents respondent (in hours) burden hour
----------------------------------------------------------------------------------------------------------------
Request for access............ Individuals..... 1000 1 5/60 83
Request to submit............. Individuals..... 100 1 10/60 17
----------------------------------------------------------------------------------------------------------------
Dated: July 17, 2014.
Pamela McInnes,
Deputy Director, NCATS, NIH.
[FR Doc. 2014-17952 Filed 7-29-14; 8:45 am]
BILLING CODE 4140-01-P
