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IACC Strategic Plan Update Question 4 (Treatments and Interventions) Planning Group Meeting Materials - November 13, 2013

Below you will find links to the materials for the meeting.

Portfolio Analysis

Conclusions by Objective for Question 4 (Treatments and Interventions)

Prepared for IACC Strategic Plan Update Question 4 Planning Group Conference Call November 13, 2013

IACC Strategic Plan Objectives Planning Group Summary Funding
4.S.A Support at least three randomized controlled trials that address co-occurring medical conditions associated with ASD by 2010.

IACC Recommended Budget: $13,400,000 over 3 years
The recommended budget was met, and more than 3 projects were funded, but these projects are just a start on what needs to be done. Projects include trials of sleep interventions, cognitive behavioral therapy for anxiety, and treatments for seizure. However, more work is needed to address those co-occurring conditions more thoroughly and to address other co-occurring conditions. $17,105,378
4.S.B Standardize and validate at least 20 model systems (e.g., cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions by 2012.

IACC Recommended Budget: $75,000,000 over 5 years
The recommended budget was met and exceeded, and more than 90 projects were supported to develop animal models. Planning Group members questioned whether this area is being too highly prioritized in comparison to other areas that are more readily applicable to current needs. $102,110,669
4.S.C Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, assisted technologies, sensory integration, medical procedures) that have not been rigorously studied for use in ASD by 2012.

IACC Recommended Budget: $27,800,000 over 5 years
The recommended budget was partially met and several projects were funded in this area, but more work and funding are needed, as this is an area of significant public interest. The group noted that interventions for minimally verbal children are needed; some projects on assistive communication technologies and robotics and speech processing technology to assist with social communication training are funded, but more are needed.  There are other projects related to minimally verbal autism in objective 4SG. $8,946,921
4.S.D Complete two multi-site randomized controlled trials of comprehensive early intervention that address core symptoms, family functioning and community involvement by 2013.

IACC Recommended Budget: $16,700,000 over 5 years
The recommended budget was met and exceeded. In 2011 and 2012, ~20 trials were supported, but it appears that these trials are small and underpowered. Larger trials are more likely to produce definitive results. $42,088,407
4.S.E Convene a workshop to advance the understanding of clinical subtypes and treatment personalization (i.e., what are the core symptoms to target for treatment studies) by 2011.

IACC Recommended Budget: $50,000
A workshop on this workshop has not taken place, based on information that is currently available. $0
4.S.F Launch randomized controlled trials of interventions including biological signatures and other measures to predict response, and monitor quality of life and functional outcomes in each of the following groups:
  • Five trials in infants and toddlers by 2013.
  • Three trials in school-aged children and/or adolescents by 2013.
  • Three trials in adults by 2014.
Total IACC Recommended Budget: 66,000,000 over 5 years
The recommended budget has been partially met.  The investment in projects under this objective is making good progress toward the recommended amount, with more than 20 projects funded in 2011 and 2012; however, more work is needed. It appears the trials may be too small and underpowered. $41,177,035
4.S.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
The recommended budget has been met and 11-16 studies were funded in 2010-2012, but work needs to continue in this area. $9,580,403
4.S.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
The recommended budget was partially met and a small number of projects were funded, but further work is needed to address some of the specific issues described in the objective. $1,404,969
4.L.A Complete at least three randomized controlled trials on medications targeting core symptoms in people with ASD of all ages by 2014.

IACC Recommended Budget: $22,200,000 over 5 years
The recommended budget has only partially been met.  Ten-fourteen studies have been funded, but they are small and likely underpowered studies.  More investment is needed on these kinds of projects in order to get meaningful results. $9,715,095
4.L.B Develop interventions for siblings of people with ASD with the goal of reducing the risk of recurrence by at least 30% by 2014.

IACC Recommended Budget: $6,700,000 over 5 years
The recommended budget has only partially been met and only a small number of projects funded. The intent of the objective has not been met. $831,111
4.L.C Conduct at least one study to evaluate the safety and effectiveness of medications commonly used in the treatment of co-occurring conditions or specific behavioral issues in people with ASD by 2015.

IACC Recommended Budget: $10,000,000 over 5 years
The recommended budget was partially met.  A small number (3-7) of studies of pharmacological interventions was funded. $6,475,421
4.L.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
The recommended budget has been partially met and 30-45 studies have been supported, exceeding the initial target.  Considerable work has been done under this objective, but these projects do not cover the scope of interventions in the community. $25,239,169
Not specific to any objective   $44,566,554
Total funding for Question 4   $309,241,132

This document is for discussion purposes only and does not reflect the decisions of the IACC

Highlighting of each total gives an indication of the progress toward meeting the IACC recommended budget for each objective. Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.

blue text is an insertion
red text is a deletion

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