Please give these people some input

[Guest guest]

 

Respond to NIMH's Request for Information about Autism Research Priorities

Due Tomorrow, January 4, 2008

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

Coordinating

Committee Strategic Plan for Autism Spectrum Disorders (ASD)

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 organized 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:

1. Treatment of ASD?

2. Diagnosis of ASD?

3. Risk factors for ASD?

4. Biology of ASD?

5. Other areas of ASD research?

Responses

Please send responses to iacc@... 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.

------------- end of NIMH message -------------

The following are suggested topics to cover:

• Highest priority should be on preventing new cases and treating individuals

already affected.

• Congress made clear in the Combating Autism Act legislative history that NIH

MUST investigate vaccines including preservatives as possible causes.

• A vaccinated vs. unvaccinated population study must be conducted.

• In order to better understand the mechanisms of autism onset, and consistent

with new emphasis on early detection and treatment, a specific program should be

undertaken, probably inpatient, to study newly diagnosed (suspected) cases of

ASD to

examine in vivo the specific processes and developmental mechanisms involved

during

onset.

• Documentation and publication of " recovered " cases.

• Evidence-based validation or rejection of treatments (behavioral and

biomedical) currently being used to treat existing cases.

Process issues at NIH regarding autism research

• All workshops and workgroup meetings must be open to interested parties.

• Transparency and frequent opportunities for public input and feedback.

• The urgency of the epidemic demands all deliberate speed.

• Workgroup Chairmen must not have financial conflicts.

• Workgroups and workshops must have balance reflecting the diversity of views

on cause and treatments for ASD, and not be biased toward past paradigms.

• The point of the Congressional mandate in the Combating Autism Act was to

reprioritize and redirect research funding, not to simply repeat past funding

hoping for a

different outcome.