Policy for CDC Release of IPP Data
March 15, 2010
Data collected through the Infertility Prevention Project (IPP) function as part of a multiregion, multi-site surveillance network. IPP data collection is not intended as research;
IPP data are collected for public health surveillance purposes, primarily to monitor
chlamydia and gonorrhea prevalence and guide STD prevention and control efforts. Data
are collected through IPP and compiled and stored by CDC. Resources permitting, CDC
will make IPP data available for use by all IPP Regional Coordinators, CDC
investigators, and other interested parties, as defined in this document (below). No
personal identifiers will be released. It is hoped that collective access to the data will
promote and stimulate use of data to guide STD programs locally and nationally.
Data obtained may be analyzed and reported by individual regions, states, project areas,
or counties, as well as at the national (CDC) level. All collaborators requesting the
release of IPP data from CDC agree to participate in analyses and reporting of data as
outlined below.
I. Document Purpose
This document is intended to be referred to and used for IPP data release requests made
to CDC. Additional suggested guidelines are also included for other IPP analyses, not
requiring any release of data from CDC (see Section V).
II. Procedures for Requesting IPP Data from CDC
Requests for IPP data may be made by CDC investigators, Regional Coordinators, or any
other interested party by using the Data Analysis and Transfer Request format (see
Attachment 1). Requests made from parties other than CDC or the Regional
Coordinators will be communicated to the Regional Coordinators impacted by the
request, as specified in this document (see Section IV).
III. Available National Data
Data available through CDC, for external use, will be defined as and consist of the
following:
 Line-listed data (test-based)
 Years: 1997 to the most current available complete year (standardized data will
only be released after publication of CDC’s annual STD surveillance report)
o Note: IPP data are currently being retrospectively standardized. Only
standardized data will be considered for release.
 All regions
 All sites
 Available data elements:
region
quarter
month
year
state_code
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The HHS region submitting the record.
The time period during which the test was conducted.
The month during which the test was conducted.
The year during which the test was conducted.
The person’s state FIPS code of residence.
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county_code
age
calculated_age
sex
race_a
race_i
race_b
race_p
race_w
race_o
race_r
race_u
race_al
ethnicity
specimen_source
facility_type
visit_type
facility_link_id
lab_id
ct_test_type
ct_test_rslt
gc_test_type
gc_test_rslt
The person’s county FIPS code of residence.
The age, in years, of the person at the time the specimen was obtained.
This variable is reported by the region and may be based on self-report or
regional calculation.
The calculated age of the person at the time the test was conducted. This
variable is calculated at CDC (specimen date – date of birth).
The biological sex of the person.
The person’s self- reported race is Asian.
The person’s self- reported race is American Indian/ Alaskan Native.
The person’s self- reported race is African American/ Black.
The person’s self- reported race is Pacific Islander/ Native Hawaiian.
The person’s self- reported race is White.
The person’s self- reported race is Other.
The person’s self-reported race is Refused to answer.
The person’s self-reported race is Unknown.
The person’s self-reported race is Asian/Pacific Islander (legacy use only).
The person’s self- reported ethnicity is Hispanic or Latino.
The source of the specimen used to conduct the test.
The health care provider or facility type. This is created from the FACILITY
REFERENCE dataset and is not taken from the line listed data reported by
the regions.
If the facility type is an integrated clinic (facility_type=”27”), the type of visit
that occurred.
A facility identifier, created at CDC, that links the primary data to the
Facility Reference File by concatenating the state with the facility ID
reported by the region.
The laboratory identification number.
The type of chlamydia test (laboratory technology).
The chlamydia test result.
The type of gonorrhea test (laboratory technology).
The gonorrhea test result.
Additional details are available upon request. A full data codebook will
accompany data released from CDC.
IV. Release, Analysis and Reporting of IPP Data
The following guidelines apply to analyses using CDC-released data collected as part of
IPP, including 1) proposed analyses, 2) public presentations, or 3) manuscripts to be
submitted for publication.
1.
Authorship
A. In general, the first author will be the individual who took the most
responsibility for that specific analysis, based on genesis of the idea, conduct of
analysis, and the actual writing of the manuscript. Typically, data collection
and reporting alone do not reflect the effort that is usually needed to warrant coauthorship. Ordering of authors (and number of authors per site) should be
based on participation in analysis and preparation of the manuscript. At a
minimum, one individual from each region contributing data to the analysis
should be encouraged to contribute to the study design and analysis (in addition
to providing data, via CDC), so that they may serve as a co-author, directly
represent and interpret their region’s contribution, and officially share the
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findings with their regional collaborators. In some cases, additional authors
from a region or from CDC may be included.
a. This consideration is primarily applicable for analyses consisting of five
or fewer regions, due to logistical difficulties in coordinating a large
number of authors while conducting analyses and preparing subsequent
products.
B. For analyses using data from six or more regions, the IPP Data and Analysis
Group should be named as an author. The IPP Data and Analysis Group (IPP
DAG) will be a standing group consisting of at least one representative from
every region. Each region may have up to two representatives, if appropriate.
CDC members of the IPP DAG will include the CDC IPP Epidemiologist, the
CDC IPP Data Manager, and the CDC IPP National Coordinator. The CDC
IPP Epidemiologist will maintain a current roster of IPP DAG membership.
C. At a minimum, published reports and presentations involving data from six or
more regions should include at least one named author from CDC, in addition
to the IPP DAG.
D. For further information regarding authorship guidance, refer to “Authorship of
CDC or ATSDR Publications”
(http://www.cdc.gov/od/foia/policies/author.htm).
2.
Review
The CDC IPP Epidemiologist will review all proposed analyses, projects, abstracts,
and papers requiring the release of IPP data from CDC, in consultation with the
appropriate IPP Regional Coordinators or their designee and CDC’s Statistics and
Data Management Branch. The purpose of this review is to ensure that requests are
scientifically sound, appropriate uses of IPP data, and not duplicate efforts. If
requests are not approved following the review, data will not be released.
For national analyses involving all regions (e.g., annual surveillance report
analyses, national trends analyses, national methodological analyses) conducted by
the CDC IPP Epidemiologist, individual regions will not be consulted. The CDC
IPP Epidemiologist will provide regular updates during twice-yearly IPP Regional
Coordinators’ Meetings to ensure that Regional Coordinators are aware of analyses.
A. For analyses and proposed projects, the CDC IPP Epidemiologist should be
notified using the recommended project proposal format (see below) and must
be provided an opportunity to comment.
a. Within two weeks of receiving a proposal, the CDC IPP Epidemiologist
(or designee) should give feedback to the proposer about whether a
proposed analysis or project is or is not an appropriate and acceptable
use of the data.
b. If an analysis or project is preliminarily deemed not acceptable by the
CDC IPP Epidemiologist, the CDC IPP Epidemiologist will further
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consult with the Surveillance and Special Studies Team Lead
(CDC/DSTDP) and/or the Epidemiology and Surveillance Branch Chief
(CDC/DSTDP).
c. If an analysis or project is considered not appropriate or acceptable by
CDC staff, the project will be discussed in a meeting or on a conference
call with all appropriate parties, including the individual proposing the
analysis, and consensus regarding initiation of that analysis or project or
denial of data release will be reached.
d. A final decision on data release acceptance will be communicated to the
requester via email. To authorize release of the specified data, the CDC
IPP Epidemiologist will send the approved Data Analysis and Transfer
Request form to the CDC IPP Data Manager.
B. Abstracts/presentations and manuscripts generated from national IPP data
should be submitted to all authors for review prior to submission for CDC
clearance. If not an author, the CDC IPP Epidemiologist should be given a
courtesy copy.
a. The first author should specify a deadline for the receipt of comments,
and it will be the responsibility of secondary authors to provide
comments by that deadline.
b. Non-response by the designated deadline will be assumed to signify
approval of the draft.
c. A reasonable time for review is at least four working days for abstracts
and 10 working days for papers following acknowledgement of
document receipt (i.e., email confirmation of receipt).
3.
Clearance
Abstracts/ presentations and papers including a CDC co-author must be submitted
for CDC clearance prior to submission for review by conference organizers,
journals, etc. CDC clearance involves review by the Division of STD Prevention
(DSTDP) to ensure that all products are of the highest quality and are scientifically
sound, technically accurate, and useful to the intended audience. Clearance also
ensures compatibility of information with CDC recommendations, so that if
findings have implications for changing recommendations or policies, the
appropriate CDC personnel are made aware of these changes. Cross-clearance of a
product may also be required if a topic is the responsibility of another Division or
Center at CDC. Authors should be considerate of the need for local clearance
requirements as well.
A.
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Abstracts should be submitted for CDC clearance a minimum of two weeks
(10 working days) prior to the submission deadline, unless other
arrangements are made in advance. For some large conferences (e.g.,
National STD Prevention Conference, ISSTDR, International HIV/AIDS
Conference), the Division or Center will specify an earlier clearance
deadline, and this should be taken into consideration.
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4.
B.
Before CDC clearance can be initiated, CDC requires either written or email
documentation of approval by all co-authors. The first author is responsible
for collecting and submitting documentation of approval by all co-authors.
C.
Publication of a paper in a journal requires CDC clearance of that paper, even
if an abstract for that paper was previously cleared.
D.
Authors should be aware that CDC clearance for journal articles may take
several weeks. The first author will be responsible for timely submission of
documents for CDC clearance purposes, as needed.
E.
Authors should be aware that products that are not high quality, scientifically
sound, technically accurate, and useful to the intended audience may not be
cleared by CDC.
F.
The first author of an abstract or paper should provide all authors (and the
CDC IPP Epidemiologist, if not already a co-author) with a final edited copy
of the abstract or paper as submitted for review by conference organizers,
journals, etc., with the date and place of submission noted.
G.
After publication, the first author should provide all authors (and the CDC
IPP Epidemiologist, if not already a co-author) with a copy of the published
version of the abstract or paper, as well as copies of slides and texts for
presented papers.
Additional guidelines
A. In order to facilitate communication, the CDC IPP Epidemiologist (or designee)
will maintain a list of pending and completed IPP analyses using data released
from CDC, including presentations, publications, and any other activities. This
list will be available upon request.
B. The CDC IPP Epidemiologist may present national IPP data without prior
approval by Regional Collaborators, as specified above.
C. IPP Regional Coordinators may present informal and formal analyses of
regional or local data without prior approval from the CDC IPP Epidemiologist.
D. Concerns about use or misuse of data or non-release of data should be brought
to the attention of the CDC IPP Epidemiologist and CDC IPP National
Coordinator (or designees).
V. Release, Analysis and Reporting of Region-Specific Data
Each Region is encouraged to develop data policies and release guidelines that specify
the conditions under which their region-specific IPP data can be released.
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The following guidelines apply to analyses using data generated as part of IPP, but not
specifically released from CDC, including 1) proposed analyses, 2) public presentations,
or 3) manuscripts to be submitted for publication. These data may include regionspecific data or data obtained directly from regional IPP infrastructure(s).
A. Region-specific analyses are appropriate (and encouraged) when an individual
region has collected data that are unique to that region, or are addressing a
question particularly pertinent to that region.
B. Use of IPP regional and local data by the respective Regional Coordinator, or
any party approved by the Regional Coordinator, may be conducted at any time
without review by IPP as a whole.
C. In general, the first author should be the individual who took the most
responsibility for that specific report, based on genesis of idea, conduct of
analysis, and the actual writing of the paper. For further information regarding
authorship guidance, refer to “Authorship of CDC or ATSDR Publications”
(http://www.cdc.gov/od/foia/policies/author.htm )
D. If applicable, other IPP collaborators should be recognized as co-authors.
a. The nature of the recognition should be based on the degree to which
collaborators contributed to the genesis of the idea, conduct of analysis,
and the actual writing of the product.
E. All authors should have the opportunity to review any reports on which they are
listed prior to their presentation or publication.
F. Any report with a CDC co-author must go through CDC clearance (see Section
IV, Analysis and Reporting of National Data, above).
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Attachment 1.
Infertility Prevention Project
Data Analysis and Transfer Request Form
Please complete the following items and forward these materials to the CDC IPP
Epidemiologist. Selected items below may not be relevant to every data request. If that
is the case, please mark these as "Not applicable." Use as much space as needed to
address key points below. Questions about this application can be directed to the CDC
IPP Epidemiologist (Lizzi Torrone, igf0@cdc.gov, 404-639-8948).
Study Name:
Date Request Initiated:
Principal Investigators:
(Names, Institutions, Telephone #, Email)
Additional Collaborators:
(Not binding. Final product may or may not include these names and may
include additional names.)
Proposed Timeline:
(Include when data are needed, any external timeline restrictions (e.g., abstract
deadlines), and expected completion date.)
Data Required:
(Be very specific, e.g., national data or multi-region data, specify which regions.
Specify years of data, data elements needed, age ranges, and any additional
exclusion criteria, as well as format of data output, e.g., sas dataset, excel table.)
Brief Project Description and Purpose:
Study Population:
Description of Methods:
(Can be brief, but should be as specific as possible to fully describe analysis and
data or analysis needs.)
Research Goals and Hypotheses:
Expected Project Products (e.g., abstract, manuscript):
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