www.aspie-editorial.com

First Published Wednesday, 4 March 2009

Hello,

Recently, the National Institute of Mental Health released several Request
for Applications (RFAs) on services-research topics relevant to autistic
people and our families as part of a broader effort to identify NIMH’s
priority areas
<http://www.nimh.nih.gov/recovery/recovery-act-nih-challenge-grants-nimh-areas.shtml>for
use of stimulus funds. The RFAs utilize funds specifically allocated under
the recently passed American Recovery and Reinvestment Act (aka: the
Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and
the broader autistic and disability communities have been lobbying for
increased representation of services-research and bioethics issues in the
NIH research agenda for some time. We’re pleased to share with you these
RFAs, which hopefully will yield research that will have a positive impact
for our community.

04-MH-104      Access to services by individuals with autism and their
families. Engage well-characterized subjects and families in existing autism
research activities in preliminary studies exploring variations in access to
and use of services, identification of targets for services interventions,
and exploration of how variations in service use affect family functioning
in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W.
301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104*              Ethical Issues in the Translation of Genetic
Knowledge to Clinical Practice. Genetics and genomics have great promise for
the development of personalized medicine, yet the ethical, legal and social
implications of both the research and application of genetic and genomic
knowledge and technology are far reaching. Studies are needed to better
understand the factors that influence the translation of genetic information
to improved human health and the associated ethical issues. Examples of
studies include those to address ethical issues related to broad sharing and
use of new genetic information and technologies for research to improve
human health, human subjects protection in genetic and genomic research, the
identifiability of genetic/genomic information and how our understanding of
identifiability is evolving, return of research results and incidental
findings to subjects, alternative models of informed consent for broad data
sharing for research, and the impact of intellectual property (IP) issues on
development of new technologies. OD(OSP) Contact: Abigail Rives,
301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D.,
301-443-3367, jnoronha@mail.nih.gov

05-MH-101*      Leveraging Existing Healthcare Networks for Comparative
Effectiveness Research on Mental Disorders and Autism. Existing large
integrated healthcare networks are needed to more efficiently conduct
large-scale effectiveness trials in “real-world” patient settings. The NIMH
solicits individual or collaborative, linked grant applications from
researchers with experience conducting studies within large integrated
healthcare delivery systems to develop and test infrastructure to
efficiently conduct trials on the effectiveness of treatment, preventive and
services interventions to improve care for people with mental disorders and
autism. Applicants can propose studies to 1) demonstrate the ability to
identify, recruit and enroll large patient populations into clinical trials,
2) harmonize electronic medical record data across multiple integrated
systems for research use, 3) pool data for common analyses, and 4) build
capacity for the collection and storage of biologic material. Contact: David
Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103*      Collaboration with AHRQ Comparative Effectiveness Research
Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to
support research grants (PA-09-070) on comparative effectiveness of clinical
treatments and services as authorized in the Medicare Prescription Drug,
Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013
mandates two mental health categories: Depression and other mental health
disorders; and Developmental delays, attention deficit hyperactivity
disorder and autism. NIMH is interested in funding ancillary studies
including but not limited to: 1) studies on the comparative effectiveness of
important new or existing technologies; and 2) assessment of the comparative
effectiveness of treatments that are commonly administered to children but
have been evaluated for safety and effectiveness in adult populations. Two
year studies will contribute to successfully implement the mental disorders
components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs,
DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care
decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364,
arupp@mail.nih.gov

04-MH-105      Developing interventions and service delivery models for the
transition to adulthood. Conduct pilot studies to develop and test
developmentally appropriate, evidence-based prevention interventions and
service delivery models for youth with who are at high risk for, or
experiencing severe mental illnesses who are transitioning to adulthood.
Studies would propose strategies to address discontinuities in service
systems and health care financing. Contact: Joel Sherrill, 301-443-2477,
jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism
Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active
in lobbying for the inclusion of quality of life oriented research in the
IACC’s priorities since this IACC’s inception in 2007. While having both
positive and negative components, the IACC Strategic Plan includes services-
and quality of life-research components, including research on meeting the
needs of autistic adults. It can be found below.

04-MH-101*      Autism: Addressing the challenge. Target research gap areas
identified by the Inter-Agency Autism Coordinating Committee (IACC)
Strategic Plan for Autism Spectrum Disorder Research, including biomarkers,
novel interventions, and new tools for screening, among other topics.
Contact:  Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the
research and scientific communities, encouraging them to apply for funding
for projects that will positively impact the lives of autistic people while
working with the self-advocate community to ensure inclusive and
participatory models of research, as we practice through our partnership
with the Academic Autistic Spectrum Partnership in Research and Education
(AASPIRE) <http://www.aaspireproject.org>. Please feel free to e-mail us at
info@autisticadvocacy.org with questions on ASAN’s research advocacy and how
you can get involved. If you are a researcher, interested in interfacing
with ASAN and our research partner AASPIRE on research priorities, design
and implementation, we encourage you to contact ASAN Board Member and
AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530