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Disclaimer
Federal
Funding Opportunities
CDC’s National Center on Birth Defects and
Developmental Disabilities
Information about funding opportunities in CDC’s
National Center on Birth Defects and Developmental
Disabilities (NCBDDD) can be found on the
NCBDDD Funding Opportunities webpage.
Information about new funding opportunities
throughout CDC can be found on the
CDC Grants and Cooperative Agreements webpage.
Grants.gov
Grants.gov
helps organizations find and apply for more than
$400 billion in federal grants electronically. It is
the single access point for more than 1,000 grant
programs offered by all federal grant-making
agencies. The Department of Health and Human
Services is the managing partner for Grants.gov.
National Institutes of Health (NIH)
Information about new NIH funding opportunities can
be found on the
NIH
Grants and Funding Opportunities webpage.
 You
can also use NIH's
Computer Retrieval of Information on Scientific
Projects (CRISP) website to learn about
currently funded projects related to ASDs. CRISP is
a searchable database of projects at colleges,
hospitals, and other research facilities that are
funded by NIH and other government agencies.
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Public and
Restricted-Use Data Sets
Autism Genetics
Initiative Data Archive
The
Human Genetics Initiative, funded by the
National Institute of Mental Health, is a national
resource of clinical data and biomaterials collected
from people with autism and other mental disorders.
The data and biomaterials in the Autism Genetics
Initiative were collected as part of a genetic
linkage study done in 1995–2001. Families in the
initiative have at least two affected siblings or
more distant relatives. Available data include age,
sex, family structure, diagnostic interview data and
status, and nonverbal IQ data. Data
and biomaterials (cell lines and DNA samples)
are available to qualified investigators who study
the genetics of autism.
Autism Genetics Resource Exchange
The
Autism Genetic
Resource Exchange (AGRE) is a resource for the
study of autism genetics. Clinical data and genetic
material on more than 700 families are freely
available for analysis by members of the scientific
community. The goal of AGRE is to speed up progress
in identifying the genetic underpinnings of autism
and autism spectrum disorders by making this
information available to the scientific community.
ClinicalTrials.gov
ClinicalTrials.gov provides free and easy
access to information on clinical studies for a wide
range of diseases and conditions, including autism.
Trials found on the website may be federally or
privately funded.
Data
Resource Center for Child and Adolescent Health
The
Data
Resource Center makes it easy to find key findings on the health and health care of
children, youth, and families. It is sponsored by
the federal Maternal and Child Health Bureau and is
led by the Child and Adolescent Health Measurement
Initiative, based at the Oregon Health & Science
University.
IDEAdata.org
IDEAdata.org
provides public access to the most recent data about
children with disabilities served under the
Individuals with Disabilities Education Act (IDEA).
These data are collected annually by the U.S.
Department of Education, Office of Special Education
Programs, in accordance with Section 618 of IDEA.
They are provided in the form of tables produced for
the Annual Reports to Congress.
National
Center on Birth Defects and Developmental Disabilities
Data sets on developmental disabilities are available from
CDC under restricted conditions because of concerns
about confidentiality of study subjects. Information
on how to request the measles, mumps, rubella/autism
study data set can be found on the
developmental disabilities website.
National Center for Education Statistics
The
National Center for
Education Statistics, located within the U.S.
Department of Education and the Institute of
Education Sciences, is the primary federal entity
for collecting and analyzing data about education.
National
Center for Health Statistics
CDC’s National Center for
Health Statistics (NCHS) has accurate, relevant,
and timely statistics to guide actions and policies
to improve the health of Americans. The
NCHS
State and Local Area Integrated Telephone Survey has in-depth state and local area data that can be used to help meet
various program and policy needs.
National Database for
Autism
Research
The
National Database for
Autism Research, being developed by the National
Institutes of Health, will provide a national
resource to support and speed up research in autism.
It is a collection of information systems supporting
the full range of autism research activities,
including genomic, imaging, laboratory, clinical,
and behavioral data sources. It provides the core
technology for a data warehouse, a data-entry
system, and a centralized source for common measures
and their documentation. It will support
large-scale, multi-site projects as well as pilot
studies and basic science investigations.
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Human
Subjects’ Protection
The
Code of Federal Regulations, Title 45, Part 46,
is the official federal policy about the protection
of human subjects in research studies. Section
46.116 addresses the general requirements for
informed consent and identifies the circumstances
under which a waiver of informed consent may be
approved.
You can find more
human subjects resources on the
CDC human
subjects research website. The site includes
checklists for writing research protocols and
informed consent forms, descriptions of additional
protections required if certain groups (such as
children and pregnant women) will be research
subjects, guidelines for defining public health
research versus non-research, and general resources
on human subjects issues. The site supports CDC
staff and staff on CDC-funded projects to ensure
compliance with federal policy on human subjects’
protection.
Health Insurance Portability and Accountability Act
of 1996 (HIPPA)
HIPAA
is a federal law that protects the confidentiality
and security of patient health information. The U.S.
Department of Health and Human Services (HHS) has
issued the “Standards for Privacy of Individually
Identifiable Health Information,” also known as the
Privacy Rule. The Office for Civil Rights (OCR), in
HHS, is responsible for implementing and enforcing
this rule. The
OCR HIPAA
website includes the latest news about HIPAA,
general information, the complete text of the
Privacy Rule, guidance on significant aspects of the
Privacy Rule, and other technical assistance
materials.
Additionally, CDC has
published a Morbidity and Mortality Weekly Report
(MMWR) article, "HIPAA
Privacy Rule and Public Health: Guidance from CDC
and the U.S. Department of Health and Human Services."
The article has an overview of the Privacy Rule,
information on how the Privacy Rule affects public
health and public health research, and links to
online resources.
Appendix A of the article explains some Privacy
Rule concepts and defines some words used in the
Privacy Rule.
Appendix B shows sample text that can be used to
explain public health issues under the Privacy Rule.
You can also learn
about the Privacy Rule on the
CDC
Privacy Rule website. The site includes basic
facts about HIPAA, public health guidance, answers
to frequently asked questions, related reading
materials, links to HIPAA resources, and a link to
the archived webcast of the Public Health Grand
Rounds on the Privacy Rule.
[Return to top of page]
Professional Organizations for Researchers
American Pediatric Society / Society for Pediatric
Research
The
Society for
Pediatric Research encourages young
investigators who are engaged in research that is of
benefit to children.
Association for Behavior Analysis International
ABA International
is a nonprofit professional membership organization
with the mission to develop, enhance, and support
the growth and vitality of behavior analysis through
research, education, and practice. The association
has an
autism special interest group.
American Psychiatric Association
The American
Psychiatric Association is a medical specialty
society of more than 35,000 U.S. and international
member physicians. Its
research
webpage has information about the association’s
research activities as well as training and funding
opportunities.
American Psychological Association
The American Psychological
Association (APA) is a 150,000-member scientific
and professional organization that represents
psychologists in the United States. The
Science
Directorate works to
communicate, facilitate, promote, and represent
psychological science and scientists.
American Public Health Association
The American Public
Health Association is the oldest and largest
organization of public health professionals in the
world, representing more than 50,000 members from
more than 50 occupations of public health. Its
Mental Health Section and
Epidemiology Section may be of particular
interest.
Association of University Centers on Disabilities
The Association of University
Centers on Disabilities is a network of
interdisciplinary centers advancing policy and
practice for and with individuals with developmental
and other disabilities, their families, and
communities. The association’s
Developmental Disabilities Research Centers
represent the world’s largest concentration of scientific expertise in the fields of
intellectual and developmental disabilities.
International Society for Autism Research
The
International
Society for Autism Research (INSAR) offers
membership to individuals engaged in academic or
research activities (full members), graduate
students and post doctoral researchers (student
members), and others vested in the study of autism.
INSAR hosts the annual International Meeting for
Autism Research.
Society for Epidemiologic Research
The Society for
Epidemiologic Research (SER) provides a forum
for sharing the latest in epidemiologic research.
The SER is committed to keeping epidemiologists at
the front line of scientific developments.
Society for Pediatric and Perinatal
Epidemiologic Research
The
Society for Pediatric
and Perinatal Epidemiologic Research fosters
reproductive, perinatal, and pediatric research,
including the study of factors that affect maternal
health and the health and development of children,
from conception through adolescence.
Society for Public Health Education
 SOPHE
is an independent, international association of
health education professionals and students that
promotes healthy behaviors, communities, and
environments. SOPHE provides guidance in the form of
a code of ethics; standards for professional
preparation, research, and practice; professional
development; and public outreach. Read SOPHE’s
resolution on
eliminating health disparities based on disability
status.
Society for Research in Child Development
The
Society for Research
and Child Development promotes multidisciplinary
research in the field of human development, fosters
the exchange of information among scientists and
other professionals of various disciplines, and
encourages applications of research findings.
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Additional Resources of Interest
Diagnostic and Statistical Manual of Mental
Disorders
The Diagnostic and
Statistical Manual of Mental Disorders (DSM),
published by the American Psychiatric Association,
is the standard classification of mental disorders
used by mental health professionals in the United
States. It applies for clinicians and researchers
from many different fields and contains diagnostic
codes (taken from ICD-9-CM) that are useful in
record keeping and medical billing. DSM-IV
(Diagnostic and Statistical Manual of Mental
Disorders, Fourth Edition), published in 1994, was
the last major revision of the DSM.
The International Classification of Diseases
The
International Classification of Diseases, Ninth
Revision, Clinical Modification (ICD-9-CM) is
the official system of codes for diagnoses and
procedures in the United States. The
International Classification of Diseases, Tenth
Revision (ICD-10) is used
internationally.
NIH
Loan Repayment Programs
The National Institutes of Health offers several
loan repayment programs for researchers.
NIH Loan Repayment Programs are a vital
component of our nation's efforts to attract health
professionals to careers in clinical, pediatric,
health disparity, or contraceptive and infertility
research.
Disclaimer: We have provided a link to
these sites because they have information that may be of interest to you. CDC does not necessarily endorse the views or information presented on
these sites. Furthermore, CDC does not endorse any commercial products or information that may be presented or advertised on these sites. [Return to top of page]
Date:
February 14, 2007
Content source: National Center on Birth Defects and Developmental
Disabilities
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