The NIH Wants YOU to Provide Recommendations for Future Autism Research!
DescriptionWill you be responding to this request from NIH? If so, what will you tell them or recommend?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:
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:
Responses
- Treatment of ASD?
- Diagnosis of ASD?
- Risk factors for ASD?
- Biology of ASD?
- Other areas of ASD research?
Please send responses to iacc@mail.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 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: 301-443-1220 FAX: 301-480-4415 Email: buckleyd@mail.nih.gov
Comments
An RFI seems to me like a flag waving that says, “We’re clueless.” I must say that it’s about time they took this grassroots and simply asked we people “in the trenches,” so to speak.
I’ll compile my list and shoot it off now. Hopefully they won’t lose the computer in which they store the information. Oh me of little faith.
Why isn’t hyperbaric chamber treatments a nationwide approved treatment for autism? Many children have benefited from this treatment. It is expensive but the long term costs of not improving the capabilities of these children is much greater. There is already enough children on record that have tried and benefited from the treatments. Has the NIH studied this?
Here is the problem. 80% of marriages with autistic children end in divorce. Most of these families, like mine, end up on some form of government assistance. It is very difficult to pay for child care for three children and also hyperbaric chamber treatments. We need help in getting this type of treatment.
Another problem is the shortage of doctors that know how to treat autistic children. My son is on a one year waiting list for the only doctor in the region that knows how to help these kids. We need incentives and educational plans to make more doctors available for these children.
And finally, lets stop the madness with these vaccines.
Actually, Tom, the efficacy of hyperbaric chambers for autism really has NOT been proven. There are studies going on right now - but no legit publications exist yet. Of course, there are many who agree with your assessment, but there’s no good evidence to stand on.
Also, FYI, the NIH is a research institution. So it isn’t up to them to determine which treatments should be covered under insurance. States and insurance co’s are the ones to petition for that!
Lisa (autism guide)
RFIs don’t mean the NIH is “clueless.”
RFIs are routine for NIH as they seek to get public opinion/input. The RFI is thus a good thing: it gives the public an opportunity to communicate directly with the people who are establishing research priorities.