IACC Co-Occurring Conditions Planning Group Conference Call - June 9, 2014
|Date:||Monday, June 9, 2014|
|Time:||1:00 p.m. to 2:00 p.m. Eastern|
|Agenda:||The planning group for Co-Occurring Conditions will have a discussion about goals of the upcoming workshop and potential invitees.|
|Place:||No in-person meeting; conference call only|
|Conference Call:||Dial: (888) 945-5890
Access code: 6525524 (Listen-only)
|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
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.
Schedule subject to change.
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No in-person meeting; conference call only.
Welcome, Roll Call and Opening Remarks
Thomas Insel, M.D.
Susan Daniels, Ph.D.
|1:15||Discussion of goals of the Co-Occurring Conditions Planning Group Workshop and potential invitees|
|1:45||Wrap-up and Next Steps|
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The Interagency Autism Coordinating Committee's (IACC) Subcommittee for Basic and Translational Research (BTR) Co-occurring Conditions Planning Group convened a conference call on Monday, June 9, 2014, from 1:10 p.m. to 1:55 p.m.
In accordance with Public Law 92-463, the meeting was open to the public. Dr. Thomas Insel, Chair, presided.
Thomas Insel, M.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Coordination (OARC), (NIMH); Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain Blog; 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); Buck Wong, National Institute on Deafness and Other Communication Disorders (NIDCD) (representing James Battey, M.D.)
Roll Call and Opening Remarks
Dr. Susan Daniels started by calling roll. Next, Dr. Thomas Insel summarized the outcome of the previous call on May 27, 2014. The Group had agreed to focus on a range of co-occurring conditions, particularly those that were under-recognized. Their intent would be to identify ways that the IACC could guide research for and increase recognition of these conditions. To this end, they agreed to plan a workshop with panels of experts on several conditions. Dr. Daniels said that a workshop was scheduled to be held on Tuesday, September 23, 2014 at the John Edward Porter Neuroscience Research Center on the National Institutes of Health (NIH) main campus. Dr. Insel said that the purpose of this call was to better define the objectives and topics of the workshop, and to identify experts on various comorbid conditions.
Dr. Walter Koroshetz suggested that the focus should be on conditions that were of greatest importance to families. The areas discussed on the last call included gastrointestinal (GI) problems; sleep disorders, endocrine issues, metabolic disorders, hypertension, obesity, and diabetes. He noted that these problems often could be interrelated. Dr. Insel suggested that it would be useful to have presentations at the workshop on some of the large epidemiologic studies that had identified common health-related conditions, such as the i2b2 (Informatics for Integrating Biology and the Bedside) study (Isaac Kohane, M.D., Ph.D.,1, 2 possible speaker), and an anticipated study on health outcomes in children with ASD and their Families (the Lewin Group). Dr. Geri Dawson noted a recent Kaiser Permanente study on health problems in adults with autism (Lisa Croen, Ph.D., possible speaker). Ms. Lyn Redwood said that neurologic conditions should also be considered. Dr. Dawson suggested that neurologic and sleep conditions could be covered in a combined panel, given that there was some research suggesting inter-relation of the two.
Dr. Insel noted that in the i2b2 study, epilepsy, GI issues, and schizophrenia were dramatically increased in individuals with ASD. The Group briefly discussed the historical problems with schizophrenia diagnosis/ASD. Dr. Matthew Carey agreed that Dr. Lisa Croen should be invited to speak on the study of mental health conditions in adults with autism (presented at the International Meeting for Autism Research [IMFAR] in May 2014). Dr. Insel said that the psychiatric comorbidities – especially anxiety, ADHD, depression – often drove individuals into treatment. So, this was an important topic. Suicidality was also a common psychiatric condition in those with ASD. Dr. Dawson said that psychiatric comorbidities were very important issues for families.
Ms. Redwood said that they Group had previously noted that autoimmune, metabolic, and mitochondrial abnormalities were not commonly diagnosed. Dr. Insel pointed out that some of these areas had been addressed previously. There were existing guidelines for the management of GI problems,3 sleep problems,4, 5 and epilepsy.6, 7, 8, 9 He asked whether the Group should still address these areas. Ms. Redwood proposed the development of an IACC position paper, which acknowledged the existence of all of the co-occurring conditions discussed during the workshop. She proposed that the Group publish a detailed scientific document with the help of the experts, in order to identify gaps and encourage research. Dr. Insel expressed concern about how much detail would be possible to cover, given the number of conditions raised. He proposed focusing on areas that had not received much attention, such as psychiatric/ behavioral conditions, metabolic/endocrine conditions, and immune conditions.
Dr. Carey pointed out that the workshop was scheduled to be held 7 days prior to September 30, 2014, when the IACC would "sunset" if the Combating Autism Act (CAA) of 2006 was not reauthorized. He asked what would happen if the Group started this work, but did not finish it. Dr. Insel said that the work could be continued by the next Committee, if the CAA was reauthorized. While a simple summary of the workshop's proceedings would be likely done by the OARC, the Group would need to review the quality of the information presented to determine if the discussions comprised a synthesis of information that was worthy of publication in a journal, white paper or other format. The science had to rigorous for the IACC to put its name on it, he said. Much of the work in this area was descriptive and anecdotal; more research was needed.
Dr. Insel summarized that the Group agreed to start the workshop with an overview from experts, who had worked with large population-based studies. Possible invitees included Isaac Kohane, M.D., Ph.D. (Harvard Medical School), Dr. Croen, and someone from the Lewin Group (Anjali Jain). Dr. Koroshetz suggested including a clinician perspective. Perhaps they could invite Margaret Bauman, M.D. (a pediatric neurologist) The Group agreed that the morning session should be more general in nature. The afternoon could consist of more specific panels. Ms. Alison Singer suggested that presenters be asked to use the same format – one that would be compatible with the Strategic Plan. This would ensure that the presentations would be specific to the Committee's needs and would outline the research gaps. Dr. Dawson added that they could encourage the presenters to think in terms of future directions, and that the Committee could pose a standard set of questions to each expert. Dr. Insel noted that it would be helpful to limit the length of the presentations to ensure there was enough time for discussion. To this end, he suggested inviting three - four experts for each panel, and reserving time for discussion until after the panel presentations. He asked for topic suggestions for the detailed afternoon panels. Ms. Singer said that the discussion should go beyond the data, and should include ideas for how to address these problems – particularly with regard to services and policies.
Dr. Dawson noted that there were guidelines for ADHD for children.10 However, focus was needed on depression and anxiety, particularly with recent data on suicide. Pharmacologically, there has been an ongoing struggle to disentangle autism from anxiety. There were important conceptual, measurement, and treatment questions to address. She recommended inviting Lawrence Scahill, Ph.D. (Emory University), and Evdokia Anagnostou, M.D. (University of Toronto). She said that there also was research on the use of cognitive behavioral therapy (CBT) for these conditions in those with autism. In particular, she mentioned Jeff Wood, Ph.D. (Semel Institute), who was adapting the technique for use with younger and minimally-verbal children. Dr. Carey pointed out that they needed the perspective of an adult with autism on these conditions. The Group agreed to consider this point after the call.
Dr. Koroshetz and Dr. Dawson proposed a panel on sleep disorders, and the Group brainstormed possible invitees. Suggestions included Ashura Buckley, M.D. (NIMH), Beth Malow, (Vanderbilt University), and Susan Swedo, M.D. (NIMH). With regard to a panel on autoimmune abnormalities/comorbidities, Ms. Redwood suggested including Judy Van de Water, Ph.D. or Jill James Ph.D. (University of California, Davis). Dr. Insel suggested Elaine Hsiao, Ph.D. (Caltech), Dr. Carey suggested Carlos Pardo-Villamizar, M.D. (Johns Hopkins University), and Dr. Dawson suggested Paul Ashwood, Ph.D. (University of California, Davis). Ms. Redwood asked about having a panel on metabolic comorbidities.
Dr. Insel pointed out that the Group had already planned an overview panel in the morning and afternoon panels on psychiatric (anxiety/depression/suicide), sleep, and autoimmune comorbidities. There would not be enough time for a fourth panel, meaning one planned panel would have to be dropped in place of a panel on metabolic comorbidities. Ms. Redwood suggested dropping the panel on sleep problems because these issues had been studied more than metabolic issues. Ms. Singer and Dr. Sally Burton-Hoyle said that they strongly felt that the sleep panel should remain, as this was an important topic to parents. Dr. Daniels suggested addressing immune and metabolic comorbidities in one panel. Dr. Insel said that Dr. Hsiao's work was more basic science, and perhaps they should instead consider an expert on metabolic issues. Dr. Koroshetz suggested inviting Robert Naviaux, M.D., Ph.D. (University of California, San Diego). Dr. Dawson noted that researchers at the MIND Institute (University of California, Davis) were exploring the interface of autoimmunity and metabolism with regard to autism. Dr. Ashwood might be able to speak to this. Dr. Daniels summarized that this panel would include Dr. Van de Water, Dr. Pardo-Villamizar, Dr. Ashwood, and Dr. Naviaux.
After discussion of many possibilities, the group agreed on an overview panel including Dr. Croen on adult, someone from Lewin Group, Dr. Kohane and someone like Dr. Margaret Bauman or another person with broad clinical experience from the ATN or another similar setting. The group also settled on a psychiatric panel, with Dr. Larry Scahill, Dr. Jeffrey Wood and Dr. Evdokia Anagnostou or similar experts to discuss anxiety, depression, suicide and other relevant psychiatric comorbidities. An additional panel on sleep and neurological comorbidities with experts such as Beth Malow and Ashura Buckley on sleep, and experts to be determined on epilepsy and other neurological conditions was also requested. A final panel on immune and metabolic conditions with experts such as Dr. Van de Water, Dr. Pardo-Villamizar, Dr. Ashwood and Dr. Naviaux was also decided upon by the Group. All panels would include 3-4 experts with short presentations and a greater focus on discussion.
After reviewing the panels and the next steps, Dr. Daniels said that she would be touch about the progress of setting up the workshop.
The conference call at 1:55 p.m.
I hereby certify that this meeting summary is accurate and complete.
/Susan Daniels/ July 7, 2014
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee
1 Kohane IS, McMurry A, Weber G et al. The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS One. 2012;7(4):e33224. [PMID: 22511918]
2 Doshi-Velez F1, Ge Y, Kohane I. Comorbidity clusters in autism spectrum disorders: an electronic health record time-series analysis. Pediatrics. 2014 Jan;133(1):e54-63. [PMID: 24323995]
3 Buie T, Fuchs GJ3, Furuta GT et al. Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs. Pediatrics. 2010 Jan;125 Suppl 1:S19-29. [PMID: 20048084]
4 Malow BA, Byars K, Johnson K et al. Sleep Committee of the Autism Treatment Network. A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov;130 Suppl 2S106–124. [PMID: 23118242]
5 Furuta GT, Williams K, Kooros K et al. Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov;130 Suppl 2S98–105. [PMID: 23118260]
6 American Epilepsy Society. Guidelines. 2013
7 American Academy of Neurology. Epilepsy. Practice Guidelines. 2014
8 National Institute for Health and Care Excellence. NICE Guidelines. 2012
9 International League Against Epilepsy. Definition and Guidelines. 2014
10 Wolraich M, Brown L, Brown RT et al. ADHD: clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics. 2011 Nov;128(5):1007-22. [PMID: 22003063]
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- Meeting Transcript (PDF – 150 KB)
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