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IACC Co-Occurring Conditions Planning Group Conference Call - May 27, 2014

meeting announcement Announcement
Topic Topic Description
Date: Tuesday, May 27, 2014
Time: 11:00 a.m. to 12:00 p.m. Eastern
Agenda: The planning group for Co-Occurring Conditions will have a discussion about co-occurring conditions in relation to autism.
Place: No in-person meeting; conference call only
Conference Call: Dial: 877-891-6977
Access code: 3941079 (Listen-only)
Materials: Meeting materials
Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 6182A
Rockville, Maryland 20852
Phone: (301) 443-6040
E-mail: IACCPublicInquiries@mail.nih.gov
Please Note: 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.

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 prior to the meeting. If you experience any technical problems with the conference call, please e-mail HelpDeskIACC@gmail.com or call 415-652-8023 for assistance.

Accommodations Statement:
The meeting will be open to the public via conference call. Individuals who participate by using this electronic service and who need special assistance such as captioning or other reasonable accommodations should submit a request to the Contact Person listed on this notice at least 3 days prior to the meeting.

Schedule subject to change.

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meeting agenda Agenda

No in-person meeting; conference call only. The materials for the meeting can be found here.

Time Event
11:00 a.m.

Welcome, Roll Call and Opening Remarks

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH)
Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH
Executive Secretary, IACC
11:15 a.m. Discussion of goals for the Co-Occurring Conditions Planning Group
11:45 a.m. Wrap-up and Next Steps
12:00 p.m. Adjournment

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meeting minutes Minutes

The Interagency Autism Coordinating Committee's (IACC) Subcommittee for Basic and Translational Research (BTR) Co-occurring Conditions Planning Group convened a conference call on Tuesday, May 27, 2014, from 11:00 a.m. to 12:16 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Dr. Thomas Insel, Chair, presided.

Participants:

Thomas Insel, M.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH); Anshu Batra, M.D., Our Special Kids; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain Blog; Judith Cooper, Ph.D. (representing James Battey, M.D., Ph.D.); Jan Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Duke University; Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Alan Guttmacher, M.D.); Donna Kimbark, Ph.D., U.S. Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Hae Young Park, M.P.H., Health Resources and Services Administration (HRSA) (representing Laura Kavanagh, M.P.P.); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)

Roll Call and Opening Remarks

Dr. Susan Daniels began the meeting by calling the roll. Dr. Thomas Insel summarized the purpose of the call, which was to clarify the aims of the Group – topics to be included and end products. Dr. Insel noted that meeting materials had been emailed to the members and were available online.

Dr. Walter Koroshetz said that the Group first needed to decide on its overall goal. He suggested that there were two paths, which seemed to be of interest to various members. One option was to better understand the medical issues that families and individuals with autism were challenged with on a daily basis, and which needed research to improve symptoms. The second option was the biology, particularly with regard to immune, metabolic, and mitochondrial abnormalities. It would not be possible to do both. The Group would need to pick one of these approaches. Dr. Sally Burton-Hoyle said that medical conditions including anxiety, depression, hypertension, and obesity not only affected quality of life for adults with autism, but were significant causes of morbidity for these individuals as well. She wanted to address these issues through this Planning Group.

Ms. Lynn Redwood asked for clarification on the two options described by Dr. Koroshetz. He said that to examine both symptom improvement and the pathogenesis of autism would necessarily limit the scope to a small subset of symptoms. Otherwise the process would become too cumbersome and complicated. If they were to adequately address metabolic and immune symptomology/pathogenesis for example, they would not be able to address other medical comorbidities.

Ms. Redwood said that, based on the discussion at the most recent IACC meeting, it seemed that the goal of this Group was to hold a workshop this summer. The goal of the workshop was to identify research needs and areas with adequate evidence for guidelines. It was her understanding that the action item from the last IACC meeting was to identify experts to attend the workshop. Dr. Koroshetz said that he was unclear as to what the goal and scope of the Group would be, given the exchange of emails following the last IACC meeting. A number of members had expressed interest in understanding the health problems and symptoms of individuals with autism seen in the clinical setting, and that families faced on a daily basis. Dr. Donna Kimbark pointed out that this Group was not a medical body, and therefore it was inappropriate for it to propose guidelines. Dr. Daniels agreed that it was not appropriate for the IACC to develop guidelines. However, they could identify some of the issues related to co-occurring conditions, or develop research recommendations.

The Group discussed the merits and drawbacks of each proposed option for the remainder of the call.

Neuroimmune/metabolic Issues Potentially Involved in ASD Etiology/Co-occurring Health Conditions or Symptoms

Dr. Geraldine Dawson told the Group that she had contacted the Autism Treatment Network (ATN) to find out about their work on immune and metabolic research and guidelines. She spoke with James Perrin, M.D., who heads the Clinical Coordinating Center for the ATN and the Autism Intervention Research Network on Physical Health (AIR-P). She also spoke with Daniel Coury, M.D., who is the Medical Director of the ATN. They told her that neither the ATN nor the AIR-P were currently working on guidelines for metabolic or immune conditions. However, these were active areas of research. ATN and AIR-P also were developing a review of research on a range of medical conditions, including immune conditions. In short, guidelines in these areas would premature, given the early state of research. Dr. Dawson proposed that the Group hold a workshop highlighting some of the ongoing research on immune- and metabolic-related conditions. Of note, the ATN and AIR-P were working on guidelines related to neurologic issues, such as seizures.

Dr. Insel asked Dr. Koroshetz if research on inflammation and oxidative stress was further along for any central nervous system (CNS) disorders. Were there tools that could be translated to autism research? Dr. Koroshetz pointed to very rare conditions (encephalopathies) with antibodies to brain proteins in terms of progress in this area. The immune system had become an active area of research with some limited success. However, mitochondrial disorders posed a more difficult problem. Techniques were not standardized and were not sensitive enough to identify the range of mitochondrial abnormalities, which often had few or no symptoms. In terms of autism, there had been progress on understanding the basic biology of maternal autoantibodies and microglia, but not much on immune and metabolic conditions. Dr. Dawson added that published case studies suggested autoimmune encephalitis as possibly being related to ASD, but these were very early emerging findings. Dr. Insel suggested that it might be useful to hear from experts in neuroimmunology and metabolism, who were not necessarily involved with autism research. This might help the Group to get a sense of the level of evidence needed to define subgroups.

Dr. Dawson added that they should consider including work on animal models of environmental influences on microglial activation, fetal brain development, and ultimately postnatal behavior. They should consider including autoimmune encephalitis research as well. She said that the workshop could focus on the immune system and developing brain. A few experts were mentioned as possible invitees: Beth Stevens, Ph.D. (Harvard University), Staci Bilbo, Ph.D. (Duke Institute for Brain Sciences), Susan Swedo, M.D. (NIMH), and Carlos Pardo-Villazimir, M.D. (Johns Hopkins University). Dr. Insel said that the area of inflammation and brain development was important to include because this was a very rapidly developing area. The IACC should be kept abreast of these advances with the Strategic Plan in mind.

Under-recognized Co-occurring Health Conditions in Individuals with ASD

Dr. Burton-Hoyle said that the health issues faced by adults with autism received very little attention. She referred to data from a study1 of psychiatric and medical conditions among adults with ASD in the Kaiser Permanente database, which was presented at the 2014 International Meeting for Autism Research (IMFAR). In this study, adults with ASD had significantly greater rates of depression, anxiety, obesity, and hypertension among other comorbidities. She said that these conditions could greatly affect quality of life. She emphasized that the health of adults with ASD was often overlooked. Ms. Alison Singer noted that Dr. Lisa Croen (Kaiser Permanente) had presented data on psychiatric comorbidities in children with ASD2 at IMFAR. Dr. Insel said that there was also available data on physical comorbidities in children with ASD from a different study. Ms. Redwood said that studies based on large databases could be problematic because there were no ICD -9 (International Statistical Classification of Diseases and Related Health Problems Nine) codes for some underlying conditions, such as mitochondrial disorders. Therefore, these would not be captured in administrative databases. Dr. Anshu Batra said that pediatricians were seeing a subgroup of children with mitochondrial disorders, who presented with ASD or ASD-like symptoms. She said that she noted this in the medical chart, but agreed that there was not an appropriate code. Dr. Insel said that it might be difficult to address mitochondrial disorders in the clinical setting because there weren't any tests that are specific enough.

Dr. Dawson said that a workshop with a clinical focus could include natural course, prevalence rates of medical comorbidities, and adults with ASD. Dr. Croen and Anjali Jain, M.D. (The Lewin Group) were mentioned as possible experts. Dr. Matt Carey said that regardless of whether immune, metabolic, and mitochondrial comorbidities were underdiagnosed, there were other comorbidities that had very high prevalence rates. These conditions more urgently needed to be addressed. Ms. Redwood said that many of these conditions already had diagnostic codes and guidelines. Therefore, the Group should focus on conditions that lacked these – and even lacked clinical recognition. However, Dr. Burton-Hoyle said that new studies presented at the recent IMFAR meeting and other recent work, added to and possibly changed the clinical picture of psychiatric and medical comorbidities. She added that clinicians were often unaware or under-educated about conditions that co-occurred with ASD. This was particularly true for adults.

Ms. Singer proposed a third workshop option, which was to better quantify the magnitude of comorbid psychiatric conditions, such as suicide, depression, and anxiety. They could build upon the work by Dr. Croen that was presented at IMFAR.

Dr. Carey said that he imagined this Group as one that could potentially take on a series of projects. However, Dr. Insel said that they could not assume that the IACC would be reauthorized by Congress.  If the IACC were to be reauthorized, the next Committee would need to decide on future directions.

Vote and Next Steps

Dr. Daniels summarized the two proposed approaches – a workshop on a range of co-occurring health conditions in individuals with ASD that were under-recognized in clinical and services settings or a workshop on neuroimmune/metabolic issues that might be involved in ASD etiology, and might result in co-occurring health conditions or symptoms. The Group took a vote on which approach to adopt.

Six members voted for a workshop on several groups of comorbidities and next steps for research and clinical practice/services(Dr. Batra, Dr. Burton-Hoyle, Dr. Carey, Dr. Cooper, Dr. Kimbark, and Ms. Park) and three voted to focus the workshop specifically on the  role of neuroimmune/metabolic issues in etiology of ASD (Ms. Redwood, Dr. Kau, and Ms. Singer). Dr. Daniels said that she would follow up by email with the members, who had to leave the call early. She would then send out an email to the Group with the final vote, work with members to schedule a call to identify experts for the workshop, and plan a date for the workshop.

After the call, additional votes were received via e-mail:

Dr. Batra, Dr. Burton-Hoyle, Dr. Carey, Dr. Cooper, Dr. Kimbark, Ms. Park and Ms. Abdull (7) were in favor of the workshop on multiple under-recognized co-occurring conditions.

Ms. Redwood, Dr. Kau, Ms. Singer and Dr. Insel (4) were in favor of the immune/metabolic etiology-based workshop.

The majority of the group voted for the workshop on multiple under-recognized co-occurring conditions, which would be discussed on a future conference call.

Adjournment

The conference call was adjourned at 12:16 p.m.

Certification

I hereby certify that this meeting summary is accurate and complete.

/Susan Daniels/ June 5, 2014
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

References

1 Croen, L.A. et. al. Psychiatric and Medical Conditions Among Adults with ASD. Paper presented at oral session, Adult Outcomes. International Meeting for Autism Research. Accessed June 9, 2014.

2 Croen, L.A. et. al. A Multi-Site Study of Prevalence, Incidence, and Age at First Diagnosis for Autism Spectrum Disorders: Findings from the Mental Health Research Network Autism Registry Study. Paper presented at oral session, Early Development II. International Meeting for Autism Research. Accessed June 12, 2014.


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meeting materials Materials

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

Autism Co-occurring Conditions Guidelines and Publications

Gastrointestinal and Eating Behaviors

Guidelines

Publications

Immune Conditions

Publications

  • D A Rossignol, R E Frye. A review of research trends in physiological abnormalities in autism spectrum disorders: immune dysregulation, inflammation, oxidative stress, mitochondrial dysfunction and environmental toxicant exposures. Mol Psychiatry. Apr 2012; 17(4): 389–401. Published online Dec 6, 2011. doi:  10.1038/mp.2011.165 PMCID: PMC3317062
  • Gehan A Mostafaand Laila Y AL-ayadh. Increased serum levels of anti-ganglioside M1 auto-antibodies in autistic children: relation to the disease severity. Journal of Neuroinflammation. 2011, 8:39  doi:10.1186/1742-2094-8-39 Published: 25 April 2011
  • Onore C1, Careaga M, Ashwood P. The role of immune dysfunction in the pathophysiology of autism. Brain Behav Immun. 2012 Mar;26(3):383-92. doi: 10.1016/j.bbi.2011.08.007. Epub 2011 Aug 28.

Intellectual Disability

Publications

Metabolic Abnormalities

Publications

Neurological and Motor Impairments

Publications

Psychiatric Conditions

Guidelines

Publications

Sleep Dysfunction

Guidelines

Publications

Other

Guidelines

Publications

Videos


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meeting transcript Transcript

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