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US proposes $154M in new autism research projects

1 Mar

The Interagency Autism Coordinating Committee (IACC) is charged with creating the “Strategic Plan“. This document lays out research priorities for the US government to pursue in the upcoming years.

The full plan is available ether by html or pdf.

If you’ve watched IACC meetings, you know that a lot of time goes into word smithing. They work out the wording that will go into the document and convey the messages with the best balance of the various viewpoints represented by the committee. Not to belittle that effort, but when the rubber hits the road, what gets into the budget is what matters most to me.

With that in mind, I’ve summarized the new objectives (long-term and short-term) that were added in 2011.

I also went through and quickly summed up the new item budget amounts. Forgive me if I missed anything, but here is what I got. First as a brief summary:

Question 1: When Should I Be Concerned?:
2 new objectives. $9,635,000

Question 2: How Can I Understand What Is Happening?:
no new objectives. $0

Question 3: What Caused This To Happen And Can This Be Prevented?:
6 new objectives. $90,570,000

Question 4: Which Treatments and Interventions will Help?:
3 new objectives. $45,500,000

Question 5: Where Can I Turn for Services?: 3 new objectives.
$3,800,000

Question 6: What Does the Future Hold, Particularly for Adults?:
no new objectives. $0

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?:
3 new objectives. $4,950,000

Total: 17 new objectives. $154,455,000

And as a more detailed summary:

Question 1: When Should I Be Concerned?
Aspirational Goal: Children at Risk for ASD Will Be Identified Through Reliable Methods Before ASD Behavioral Characteristics Fully Manifest.

New Short-Term Objectives:

2011 E. Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012. IACC Recommended Budget: $9,600,000 over 5 years.

2011 F. Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.IACC Recommended Budget: $35,000 over 1 year.

New Long-Term Objectives: None.

Question 2: How Can I Understand What Is Happening?
Aspirational Goal: Discover How ASD Affects Development, Which Will Lead To Targeted And Personalized Interventions.

New Short-Term Objectives: none.

New Long-Term Objectives: None.

Question 3: What Caused This To Happen And Can This Be Prevented?
Aspirational Goal: Causes Of ASD Will Be Discovered That Inform Prognosis And Treatments And Lead To Prevention/Preemption Of The Challenges And Disabilities Of ASD.

New Short Term Objectives:

2011 F. Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” This link exits the Interagency Autism Coordinating Committee Web site as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

2011 G. Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

2011 H. Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:

* Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and

* Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.

Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

2011 I. Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012. IACC Recommended Budget: $1,000,000 over 2 years.

2011 J. Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

2011 K. Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

New Long Term Objectives: None.

Question 4: Which Treatments and Interventions will Help?
Aspirational Goal: Interventions Will Be Developed That Are Effective For Reducing Both Core And Associated Symptoms, For Building Adaptive Skills, And For Maximizing Quality Of Life And Health For People With ASD.

New Short Term Objectives:

2011 G. Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:

* Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;

* Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and

* Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.

IACC Recommended Budget: $3,000,000 over 2 years.

2011 H. Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions. IACC Recommended Budget: $5,000,000 over 3 years.

New Long Term Objectives:

2011 D. Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:

* Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;

* Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and

* Studies of widely used community intervention models for which extensive published data are not available.

Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes. IACC Recommended Budget: $37,500,000 over 5 years.

Question 5: Where Can I Turn for Services?
Aspirational Goal: Communities Will Access And Implement Necessary High-Quality, Evidence-Based Services And Supports That Maximize Quality Of Life And Health Across The Lifespan For All People With ASD.

New Short Term Objectives:

2011 D. Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years.

New Long Term Objectives:

2011 D. Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. IACC Recommended Budget: $2,000,000 over 2 years.

2011 E. Support three studies of dental health issues for people with ASD by 2015. This should include:

* One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment. IACC Recommended Budget: $900,000 over 3 years.

* One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years.

* One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. IACC Recommended Budget: $900,000 over 3 years.

Question 6: What Does the Future Hold, Particularly for Adults?
Aspirational Goal: All People With ASD Will Have The Opportunity To Lead Self-Determined Lives In The Community Of Their Choice Through School, Work, Community Participation, Meaningful Relationships, And Access To Necessary And Individualized Services And Supports.

New Short-Term Objectives: none
New Long-Term Objectives: none

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Aspirational Goal: Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research.

New Short- and Long-Term Objectives

2011 N. Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012. IACC Recommended Budget: $1,850,000 over 1 year.

2011 O. Create an information resource for ASD researchers (e.g., PhenX Project This link exits the Interagency Autism Coordinating Committee Web site) to share information to facilitate data sharing and standardization of methods across projects by 2013.

* This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.

* This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.

IACC Recommended Budget: $2,000,000 over 2 years.

2011 P. Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. IACC Recommended Budget: $1,100,000 over 2 years.

Release of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research

28 Feb

The IACC has released the 2011 Strategic Plan. I have quoted the announcement below, which includes the links:

The Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination (OARC) are pleased to announce the release of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. The updated Strategic Plan contains 16 new research objectives covering a variety of issues, including use and accessibility of interventions for non-verbal people with ASD, health promotion for people with ASD, and issues related to safety for people on the spectrum. The HTML version of this year’s Strategic Plan is fully hyperlinked throughout to websites with information about funders, programs and over 180 ASD-related publications, which should make the Plan an especially useful resource for people with ASD, families, providers, research funders, researchers, policymakers, and the public. A formatted, downloadable PDF version of the Plan is also available. Links to the new Strategic Plan and related information, including a news update about the Plan, can be accessed from the IACC Home Page.

US plan for autism research: focus on environmental causation re-emphasized

28 Feb

The Interagency Autism Coordinating Committee has released the 2011 Strategic Plan. This maps out the proposed directions that government funded research should take in regards to autism in the coming years.

The area that gets the most scrutiny is causation research, so I am blogging it first. Once again, the IACC has put forth a program with the major emphasis on environmental causation projects, with over 70% of funding going towards environmental causation:

Under short term objectives for “Question 3: What Caused This to Happen and Can It Be Prevented?” there are 6 new objectives for 2011. No new “long term” objectives.

Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:
o Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
o Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.
Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012.
IACC Recommended Budget: $1,000,000 over 2 years.

Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

Many have claimed in the past that the IACC has not supported environmental causation. This is just not true, and it is not true going forward. Causation research in the past few Strategic Plans has focused the majority of funding on environmental and gene-environment causation.

Many have claimed that this blog is somehow against environmental causation research. Again, this is clearly not true.

I doubt either argument will go away. But, those are minor issues. What is important is what gets done. Causation research is important.

I would, and have, argued that research into supporting autistics alive today is also highly important. Research involving issues concerning autistic adults is vastly underfunded in my view. Total budget for new projects in the “WHAT DOES THE FUTURE HOLD, PARTICULARLY FOR ADULTS?” is zero. That’s right. No new projects in this area.

Besides neglecting the needs of a large number of adults today, this is poor planning for the future of today’s children. A person will spend about 75% of his/her life as an adult. Much, if not most, of that time without the support of parents.

Upcoming IACC Full Committee Meeting – Tuesday, January 18, 2011 – Rockville, MD

29 Dec

The Interagency Autism Coordinating Committee (IACC) creates the “Strategic Plan” which serves as the main roadmap for autism research funding in the United States.

The IACC is going to have a full committee meeting on January 18 to update the Strategic Plan.

Or, to put it simply, this is where the rubber meets the road for the IACC. If you want to have an impact–and, yes, public input does have an impact–now is your chance to submit public comments. One place to send comments is the address given in the announcemt below: IACCpublicinquiries@mail.nih.gov.

Here is a pie chart of the funding breakdown according to the categories that the IACC Strategic Plan uses.

(click to enlarge).

Figure that research takes 5-10 years to bear fruit, in general. When I take a look at that pie chart and think about what segments have the possibility of really impacting my child’s life in the relatively near future, I would like to see more money spent in areas involving older children, adolescents and adults.

Here is the IACC announcement.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 18, 2011 from 10:00 a.m. to 5:00 p.m. ET in Rockville, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC will review and approve the final 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

Meeting location:
The Neuroscience Center – Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
6001 Executive Boulevard
Conference Rooms C and D
Rockville, MD 20852

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Upcoming IACC Subcommittee on Safety Conference Call – Wednesday, January 12, 2011

28 Dec

The Interagency Autism Coordinating Committee (IACC) has recently added emphasis to safety concerns. The Safety subcommittee will meet on January 12.

The IACC has 4 committees:

* Full Committee
* Subcommittee for Planning the Annual Strategic Plan Updating Process
* Services Subcommittee
* Subcommittee on Safety

At present, much of the focus and the budget recommended by the IACC goes towards causation (with the majority of that of that going towards environment and gene-environment causation) and early childhood therapies. Areas like safety and services, while they have their own subcommittees, get far less budget.

One way to make that change is to show an interest. Send a public comment. Share your concerns or expertise.

Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety Conference Call

Please join us for a conference call of the IACC Subcommittee on Safety that will take place on Wednesday, January 12, 2011 from 11:00 a.m. to 1:00 p.m. ET.

Agenda: The purpose of the call is to discuss a draft letter to the Secretary of Health and Human Services on issues related to autism and safety, as well as plans for future activities.

Conference Call Access
USA/Canada Phone Number: 888-456-0356
Access code: 1427016

This conference call will be open to the public. No registration is required. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard.

If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

Health inequity in children and youth with chronic health conditions.

10 Dec

A recent paper in the Journal Pediatrics looks at differences in prevalence, incidence, survival and other disparities for children with chronic health conditions. These conditions include autism along with acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury.

Health inequity in children and youth with chronic health conditions.

Berry JG, Bloom S, Foley S, Palfrey JS.

Complex Care Service, Program for Patient Safety and Quality, Children’s Hospital Boston, Fegan 10, 300 Longwood Ave, Boston, MA 02115, USA. jay.berry@childrens.harvard.edu
Abstract

BACKGROUND: Over the last decades, there have been great advances in health care delivered to children with chronic conditions, but not all children have benefitted equally from them.

OBJECTIVES: To describe health inequities experienced by children with chronic health conditions.

METHODS: We performed a literature review of English-language studies identified from the Medline, Centers for Disease Control and Prevention, National Cancer Institute, and Cystic Fibrosis Foundation Web sites that were published between January 1985 and May 2009, included children aged 0 to 18 years, and contained the key words “incidence,” “prevalence,” “survival,” “mortality,” or “disparity” in the title or abstract for the following health conditions: acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders, cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury.

RESULTS: Black children had higher rates of cerebral palsy and HIV/AIDS, were less likely to be diagnosed with ADHD, had more emergency department visits, hospitalizations, and had higher mortality rates associated with asthma; and survived less often with Down syndrome, type 1 diabetes, and traumatic brain injury when compared with white children. Hispanic children had higher rates of spina bifida from Mexico-born mothers, had higher rates of HIV/AIDS and depression, were less likely to be diagnosed with ADHD, had poorer glycemic control with type 1 diabetes, and survived less often with acute leukemia compared with white children.

CONCLUSIONS: Serious racial and ethnic health and health care inequities persist for children with chronic health conditions.

Autism is not unique in that there are racial and ethnic disparities involved. It is clear that many of the disparities involving autism are artificial. For example, there almost certainly aren’t large differences between races and ethnic groups in terms of the fraction of autistic people. And, yet, there are big differences in the number of people identified as autistic.

One focus of the IACC is to direct more research into better identification within the diverse groups in the US, as well as seeing what differences may really exist withing these groups. Here is one short term goal in the Plan:

Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.

I am of the opinion that we could use a lot more money applied to exploring autism in diverse populations.

Upcoming IACC Full Committee Meeting – December 14, 2010 – Bethesda, MD

8 Dec

The Interagency Autism Coordinating Committee will have a full committee meeting on December 14th. This meeting is to work on the update for the Strategic Plan.

Now is a good time to send the IACC your input. What would you like them to know as they make the Plan? What research should they focus upon? What should they not focus upon?

Want a quick way to send your thoughts? Click here to send an email with the subject “IACC public comment”.

Here are some links to send emails with various subject lines:

Please do more research involving issues concerning autistic adults

Please do more research on services

the current science doesn’t support spending money on the vaccine hypothesis

Here is the announcement. If you have the time, even for part of the day, it is worthwhile to listen in and hear how these decisions are made.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Tuesday, December 14, 2010 from 10:00 a.m. to 5:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

Meeting location:
The Bethesda Marriott – Google map imageMap and Directions
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

IACC Subcommittee for Planning the Annual Strategic Plan Updating Process tomorrow (Dec. 3rd)

3 Dec

Tomorrow there will be a subcommittee meeting for the IACC to work on the Strategic Plan. You can listen in or watch via webinar. It is likely past time for any public comments to be accepted for this meeting, but if you have anything to suggest, they will keep it and distribute it after the meeting (possibly in a future meeting).

Reminder: Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process

Please join us for an IACC Subcommittee for Planning the Annual Strategic Plan Updating Process meeting that will take place on Friday, December 3, 2010 from 10:00 a.m. to 4:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The subcommittee will discuss the updating of the IACC Strategic Plan for ASD Research.

Meeting location:
The Bethesda Marriott
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible through a webinar and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com.

Webinar Access: https://www2.gotomeeting.com/register/687738010

If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

2010 IACC Services Workshop: Building a Seamless System of Services and Supports Across the Lifespan

6 Nov

The Interagency Autism Coordinating Committee (IACC) works to create a strategy for the government and other major funders of autism research.

This is short notice, but there is an important meeting of the IACC this Monday: Building a Seamless System of Services and Supports Across the Lifespan. Services are a minor part of the IACC’s mission in terms of funding so far. I for one would like to see that change. It will be interesting to hear what input the IACC gets at this meeting. For me, the good recommendations made at this meeting will be good points to remind the IACC of in the future. For those with more experience in these matters, it may be good to listen in and, later, offer corrections where appropriate.

As I said above, I’d really like to see services get a greater focus by the IACC. When the public shows support and interest in these meetings it sends a clear signal to the IACC that this is an area worth concentrating upon.

Please join us for the 2010 IACC Services Workshop: Building a Seamless System of Services and Supports Across the Lifespan that will take place on Monday, November 8, 2010, 9:00 a.m. to 5:30 p.m. ET in Rockville, MD. Onsite registration will begin at 8:00a.m.

Agenda: The workshop will focus on policy issues related to the system of services and supports for people with ASD and their families, featuring talks from state officials and disability experts from across the country.

Meeting location:
Hilton Washington DC/Rockville Hotel & Executive Meeting Center – Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

1750 Rockville Pike
Rockville, MD 20852

The meeting will be open to the public and pre-registration is recommended. Today is the last day for online pre-registration, after which onsite registration will be available on Monday. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, public comment instructions and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Stakeholder meeting October 29: Study of Health Outcomes in Children with ASD and Their Families

26 Oct

The United States National Institute of Mental Health has called a meeting to discuss a study on health outcomes on children with ASD and their families. The meeting will also be a chance for community input.

I don’t see an easy way to provide input in advance of the meeting.

There are many topics I can think of for input, but a big piece of information would be to question why this is limited to children with ASD?

Meeting Announcement

Study of Health Outcomes in Children with ASD and Their Families – Stakeholders’ Meeting

October 29, 2010
NIH Neuroscience Center
6001 Executive Blvd.
Conference Room C
Rockville, MD 20852

Sponsored by:

National Institute of Mental Health (NIMH)

NIMH recently awarded a two-year contract to The Lewin Group to conduct a study of health outcomes in children with autism spectrum disorders (ASD) and their families. The objective of this study is to advance our understanding of ASD, including variables related to diagnosis, health conditions, and health care outcomes, using existing administrative data.

NIMH will host an informational stakeholders’ meeting, inviting participation from individuals with ASD, parents of children with ASD, community care providers, ASD researchers, and patient advocates. The Health Outcomes research team will provide an overview of the goals, objectives, and methods of the study. The meeting is also a venue for input from the community about the particular health issues that are of the greatest concern, as well as ASD-specific challenges or complications related to health care service provision and utilization

The meeting will be open to the public, and will be held on October 29, 2010, 2:00pm to 4:00pm EDT at the NIH Neuroscience Center. Participation by webinar is also possible. To register for in-person attendance at the meeting, or for webinar participation, please go to: http://dgimeetings.cvent.com/d/ydq5rc/4W .

It seems likely that this study will address questions such as whether there is a higher incidence of gastrointestinal problems in autistics, and how GI issues evolve with time in those kids who have it. I would expect attention on questions such as whether autistic kids are more prone to infections and/or get more antibiotics, how medicated these kids are, the incidence of epilepsy, the incidence of apraxia, and how these conditions progress with time.

I hope a good method is made for input for this meeting, other than attendance.

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