IACC NIH Request for Information Deadline Almost Upon Us

[Guest guest]

Hello all,

The deadline for submitting information to the Inter-Agency Autism

Coordinating Committee is tomorrow. For those of you intending to submit

comments, we urge you to do so soon. Details on how to do that are included

below. ASAN's previous testimony to this body is available

here<http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=22>

and

please don't hesitate to include language from or refer to our testimony in

your comments. This is an important opportunity to be heard and we hope the

IACC hears the voice of the self-advocate community as it determines the

research agenda for the coming years.

Regards,

Ari Ne'eman

The Autistic Self Advocacy Network, President

http://www.autisticadvocacy.org

info@...

Request for Information (RFI): Research Priorities for the Interagency

Autism

Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD)

Notice Number: NOT-MH-08-003

Release Date: December 19, 2007

Response Date: January 4, 2008

Issued by: National Institute of Mental Health (NIMH,

(_http://www.nimh.http://_ (http://www.nimh.nih.gov/) )

Description

The purpose of this time-sensitive RFI is to seek input from ASD

stakeholders

such as individuals with ASD and their families, autism advocates,

scientists, health professionals, therapists, educators, state and local

programs for

ASD, and the public at large about what they consider to be high-priority

research questions.

Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the

Interagency Autism Coordinating Committee (IACC) and requires that the IACC

develop a strategic plan for ASD research. The IACC includes both Federal

and public

members who are active in the area of ASD research funding, services, or

advocacy. In its inaugural meeting on November 30, 2007, the IACC approved

a

process for developing the strategic plan that includes multiple

opportunities for

stakeholder input. This RFI is a first step in receiving broad input at the

beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic

plan

for ASD research, the IACC will convene several scientific workshops in

January 2008. The responses received through this RFI will be collated,

summarized,

and provided to workshop participants. The scientific workshops will be

organ

ized around four broad areas of ASD research:

Treatment – includes ASD treatment, intervention, and services research

that

aim to reduce symptoms, promote development, and improve outcomes. This

area

includes the development and evaluation of medical, behavioral,

educational,

and complementary interventions for ASD. In addition, this area includes

research studies that evaluate the effectiveness of treatments in real

world

settings, disparities in ASD treatment among specific subpopulations,

practice

patterns in ASD programs and services, and their cost-effectiveness.

Diagnosis – is concerned with the accurate and valid description of ASD

(phenotype) both at the individual and the population level. The public

health

impact of ASD can be better understood by such studies. In addition, this

area

concerns itself with the diversity of what constitutes ASD and the

characteristics of the condition over the lifespan.

Risk Factors – has to do with investigations of the factors that contribute

to the risk of having an ASD in a given person or population. This includes

genetic studies of clusters or sporadic occurrences of ASD, studies that

focus on

environmental factors, e.g., intrauterine events or exposure to toxins,

which

could lead to ASD, and the interaction between these factors that

concentrate

risk for ASD.

Biology –studies the underlying biological processes that lead to

developmental and medical problems associated with ASD. This includes

research in the

area of neurosciences but does not confine itself to neurosciences.

Therefore,

research on other organ systems, interactions between organ systems, and/or

other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six

months and will include several additional opportunities for public input.

Information Requested

We are interested in receiving your input and ideas about what are

high-priority questions and issues for advancing research on ASD. We ask for

your

constructive and specific suggestions in the following areas (please refer

to the

above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

Treatment of ASD?

Diagnosis of ASD?

Risk factors for ASD?

Biology of ASD?

Other areas of ASD research?

Responses

Please send responses to _iacc@... <_iacc%40mail.nih.iac>_ (mailto:

iacc@... <iacc%40mail.nih.gov>) no

later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI

identifier

NOT-MH-08-103 in the subject line. The responses received through this RFI

will be collated, summarized, and provided to scientific workshop

participants in

January 2008. Summarized results will also be made available to the public.

Any proprietary information should be so marked. Respondents will receive

an

email confirmation acknowledging receipt of their response, but will not

receive

individualized feedback.

Inquiries

Inquiries regarding this notice may be directed to:

Diane Buckley

Office of the Director

National Institute of Mental Health

6001 Executive Boulevard, Room 8235, MSC 9669

Bethesda, MD 20892-9669

Telephone:

FAX:

Email: _buckleyd@... <_buckleyd%40mail.buckley>_ (mailto:

buckleyd@... <buckleyd%40mail.nih.gov>)