AIR-P Network Activities - December 2018
December 13, 2018
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The Autism Intervention Research Network on Physical Health (AIR-P), led by Karen Kuhlthau, PhD, conducts research on evidence-based interventions to improve the physical health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities, with an emphasis on reaching underserved communities. Family leaders serve on the AIR-P advisory group and local advisory groups, they review grants and manuscripts, and participate in all projects. The key goals for the AIR-P Network are two-fold:
- To conduct multi-site research on evidence-based interventions that improve the physical health of children and adolescents with ASD and developmental disorders, especially underserved populations.
- To transform AIR-P into a multi-site Autism Learning Health Network (ALHN) which will provide a collaborative laboratory for developing and testing evidence-based interventions and accelerating the adoption of effective interventions and system management approaches into practice.
AIR-P partners with the Autism Treatment Network funded by the Autism Speaks Foundation to conduct research and improve care. During the current funding cycle, the AIR-P has multiple research projects and is working collaboratively with the James M. Anderson Center for Health Systems Excellence (AC) at Cincinnati Children's Hospital Medical Center on the Autism Learning Health Network project. Current Network sites include: Children's Hospital of Los Angeles, Children's Hospital of Philadelphia, Cincinnati Children's Hospital, Lurie Center for Autism/MassGeneral Hospital, Nationwide Children's Hospital/The Ohio State University, Toronto (Holland Bloorview Rehab, Surrey Place Centre, and the Hospital for Sick Children), University of Alberta/Glenrose Rehab Hospital, University of California - Irvine , University of Missouri, University of Pittsburgh, University of Rochester, and Vanderbilt University Medical Center.
AIR-P RESEARCH ACTIVITIES
ECHO Autism is the first of the AIR-P's signature projects. ECHO (Extension for Community Healthcare Outcomes) represents an innovative telemedicine-based platform that connects local PCPs with specialists at academic medical centers during weekly ECHO Autism clinics. During ECHO Autism clinics, specialists provide education in best-practice treatment protocols, case-based learning, and co-management. This multi-site study builds upon an ECHO Autism pilot study that was done at the University of Missouri's Thompson Center for Autism in 2015.
This study examines the effectiveness of ECHO Autism in increasing 1) rates of ASD screening during 18-month well-child visits in underserved communities, 2) the proportion of underserved children with ASD who receive screening, appropriate care for sleep problems and constipation, and 3) the monitoring of underserved children with ASD who are also taking psychotropic medications. These outcomes will be achieved by increasing provider knowledge, improving clinical practice/behavior, and enhancing provider self-efficacy in caring for children with ASD across a large multisite sample of PCPs working in underserved communities. Participating ATN sites have been rolling out in a step-wedge fashion since September 2016. To date, all of the 10 study sites have completed their 6-month ECHO Autism clinic cycles. 147 primary care physicians were enrolled in the ECHO Autism study. Data collection for the study was completed in September 2018 with data analysis currently underway. Support from our partners at Autism Speaks provides funding for sites to continue to implement ECHO Autism clinics after the ECHO Autism study.
The AIR-P Dental Study, "Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with ASD," is a randomized controlled trial to compare the efficacy of the established AIR-P Dental Toolkit to a combined regimen involving the Dental Toolkit and a parent-mediated behavioral intervention using video modeling. Study objectives include improving home dental hygiene, oral health, and compliance with dental procedures in underserved populations with ASD. The study teams at the University of California (Irvine) and Nationwide Children's Hospital have enrolled 112 families into the study to date.
The AIR-P PETRA Study, "Physical Exercise to Reduce Anxiety" successfully completed its initial 1-year pilot phase and has now expanded into a 3-year multi-site study to examine the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families. The physical exercise program is designed to incorporate the new guidelines for physical exercise in children from the Centers for Disease Control. Compliance, parent-rated anxiety, and salivary cortisol will be measured before and after completion of the exercise and control group interventions. Long term goals are to develop an evidence-based physical exercise intervention toolkit for the treatment of anxiety and to improve physical health in children with ASD from underserved populations. 54 families were enrolled in the pilot phase, and 41 families have been enrolled in the PETRA expansion phase to date.
Through our most recent research RFA mechanism, we will solicit proposals to address critical questions in improving medical care for children and youth with autism and related neuro-developmental disorders. This RFA will support innovative projects that will address feasibility and the first stage of a trial that can lead to changes in treatment for children with ASD and other related conditions. The intention is to allow investigators to demonstrate feasibility and potential for success to justify expansion to a full multi-center study that can lead to changes and improvements in medical care in autism. All proposals will reflect the network interest in physical health of children with ASD, with a particular emphasis on addressing disparities in effective interventions, treatment, and access to care experienced by underserved minority and rural communities.
AUTISM LEARNING NETWORK
Since the start of the current funding cycle, the AIR-P/ATN has been transitioning into a Learning Health Network (LHN) in collaboration with James M. Anderson Center for Health Systems Excellence (AC) at Cincinnati Children's Hospital Medical Center. LHNs use ongoing and transparent outcome measurement, shared learning across practices, and quality improvement methods, to standardize care processes across systems while customizing care to individual patient needs. They provide data for comparative effectiveness research that can lead to new interventions and rapid implementation of these in treatment of physical conditions.
Since fall 2014, family representatives, network clinicians and researchers, AC faculty, AS representatives, and Network Coordinating Center staff have used a structured design process to establish the Autism Learning Health network (ALHN) goals, with a main focus on identifying barriers and successful strategies for optimizing physical health for all children with ASD. The target population includes children ages 3-12 seen at sites for follow-up visits within the last 12 months. Currently, the network is using small tests of change (PDSAs) at the site level to establish best practice around enrolling families into the ALHN and collecting patient/proxy reported outcome (PRO) data from enrollees. Recently, the ALHN received PCORnet funding to collaborate with the Interactive Autism Network (IAN) to develop best practices for collecting PRO data. In addition to this and as well as AIR-P funding, the ALHN effort is supported by Autism Speaks.
AIR-P EFFORTS
The AIR-P continues to provide opportunities for researchers from across the network to collaborate with each other as well as other CAAI sponsored programs such as LEND and Developmental-Behavioral Pediatrics Training Programs. Successful partnerships with these programs have increased AIR-P presence at various scientific meetings, including abstracts at the International Society for Autism Research conference and the Pediatric Academic Societies meeting, and papers submitted for publication. In 2018, AIR-P network members were represented with 7 posters at INSAR, 1 poster at the American Psychological Association conference, and 3 posters at PAS.
Additionally, the AIR-P has provided support to investigators interested in mining data from the Autism Treatment Network (ATN) Registry. We have developed a Request for Data (RFD), which has allowed individuals to submit a formal request to obtain summary data from the ATN Registry. Past analyses by external investigators have led to dissertations and manuscripts by trainees in pediatrics and psychology as well as other junior faculty members at various institutions. Individuals interested in learning more about the registry data should visit http://asatn.org/request/data.
The AIR-P continues to host a monthly webinar series titled "Advances in Autism Research & Care (AARC)", which feature care providers and investigators presenting to a diverse audience of parents, clinicians, researchers, and students. Investigators, including both seasoned and junior investigators at AIR-P, are invited to present their work on various stages of research and study development. If you're interested in being added to the distribution list for information on these webinars, please email Megan Eaves, Research Coordinator, at [email protected]. Archived webinars can be viewed by visiting the network's YouTube page: http://www.youtube.com/asatnairpnetwork.
Since 2009, the Network has published over 130 manuscripts in various academic and medical journals. To improve dissemination of this work and increase accessibility, lay summaries of many network publications have been written and posted to the Network website and can be found here: http://asatn.org/biblio/nottype/1000.
For more information on the AIR-P, please visit our public website: http://www.airpnetwork.org.
Loss of Two Colleagues, Friends, Role Models
The Autism Intervention Research Network for Behavioral Health (AIR-B) is celebrating the lives of two extraordinary individuals, Dr. Tristram Smith, Ph.D., and Dr. Loretta Jones, M.A., Th.D. Both individuals made substantial contributions to building meaningful partnerships in their communities, as well as communities across the country.
Dr. Tristram Smith passed away on August 6, 2018. He was the Haggerty-Friedman Professor in Developmental/Behavioral Pediatric Research at the University of Rochester Medical Center (URMC). As noted by Dr. Iadarola at the University of Rochester, while Dr. Smith was an internationally renowned researcher, he will be "best remembered for his self-deprecating humor while simultaneously inspiring an admiring room full of parents and professionals. He was a man of brilliance but also kindness, integrity, creatively, and a quick, dry wit". Longtime AIRB collaborator, Dr. Smith was a mentor to many trainees across sites and will be sorely missed.
We also lost Dr. Loretta Jones, who passed away on November 22, 2018. Dr. Jones, the founder of Healthy African American Families (HAAF II) and the AIR-B network's longtime community partner of seven years, provided us with guidance on her vision of the importance of building partnerships between community members and academics as co-equals in order to address inequalities in health care and to better serve our communities. Dr. Jones was a strong woman - fierce, passionate, and un- afraid to call out even the most established researchers any time she believed a decision did not consider community as the top priority. Her contributions have had a significant impact on underrepresented communities and on research; namely, community-partnered participatory research (CPPR), which she developed with her colleagues. CPPR teaches us all that research can be, and should be, done with the community, not just about or in the community; as Dr. Jones would say, it's about "we, us, our."
Dr. Smith and Dr. Jones both achieved many honors over their lifetimes, and have left legacies that will go on to influence the field of healthcare generally, and autism research specifically for years to come.
Pictures of Dr. Loretta Jones and Dr. Tristram Smith during AIR-B3's community conference in South Los Angeles, 2015.
The 2nd Healthy Weight Research Network Symposium
~ Free Symposium ~
Promoting Healthy Weight in Children & Youth with Intellectual and Developmental Disabilities: Current Research and Future Directions
Friday April 5, 2019
9AM to 6PM
Parker Omni House, Boston, MA
This free symposium will provide a forum for researchers, practitioners, policymakers, people with disabilities, family members, and other interested individuals to learn about current research in the field related to promoting healthy weight for children intellectual and developmental disabilities (IDD). Through knowledge translation and dissemination this interdisciplinary symposium provides an opportunity to shine a light on the need for evidence-based health promotion programs, practices, and policies on behalf of this population.
The symposium will include:
· talks by leading researchers on health disparities, nutrition, eating behaviors, physical activity, and weight management for children with IDD
· a poster session to highlight innovative research activities that align with the HWRN's research agenda
· a networking reception (during the poster session) to enable conference participants to meet and learn from one another
Register now to attend! https://tinyurl.com/HWRN2019
For more information about the HWRN, see: https://HWRN.org
The HWRN is supported by a cooperative agreement from the Maternal Child Health Bureau (UA3MC25735) and is coordinated by the E.K. Shriver Center at UMass Medical School in collaboration with Tufts University School of Medicine.
Autism Longitudinal Data Project * finds that cytokines (leptin, adiponectin) and rapid growth during infancy are associated with ASD risk
The Health Resources and Services Administration (HRSA) funded Autism Longitudinal Data Project (ALDP) which leverages the Boston Birth Cohort (BBC), led by Dr. Xiaobin Wang. The BBC is a prospective birth cohort study on pre- and peri-natal determinants of autism spectrum disorder (ASD) and developmental disabilities. The BBC is predominantly an urban low-income minority birth cohort consisting of over 8,600 mother-infant pairs and is one of the largest U.S. prospective birth cohort studies on ASD and other developmental disabilities.
The October 2018 issue of Autism Research (https://www.ncbi.nlm.nih.gov/pubmed/30248249) published a study by the ALDP investigators who examined the association between early life growth, leptin (a proinflammatory cytokine that plays a role in energy homeostasis) and ASD risk. This study was conducted in a sample of 822 subjects from the BBC. ASD was defined from diagnostic codes in electronic medical records. The main findings from this study were that 1) extremely rapid weight gain during infancy, and 2) higher early childhood leptin levels before autism diagnosis were associated with a greater ASD risk. Further, the study showed that early childhood leptin indirectly mediated the relationship between infancy rapid weight gain and subsequent risk of ASD.
Another study by the ALDP investigators was published in July 2018 in the Journal of Autism and Developmental Disorders (https://www.ncbi.nlm.nih.gov/pubmed/30043356) to assess the association between adiponectin (a cytokine produced by adipose tissue that can counter leptin) and ASD risk. This study included 847 subjects and used electronic medical records to identify ASD cases. The study showed that cord adiponectin was inversely associated with ASD risk and this was independent of preterm birth, early childhood adiponectin and other known ASD risk factors. Similarly, early childhood adiponectin, assessed prior to ASD diagnosis, was also associated with lower risk of ASD. However, this association was less robust and weakened after adjusting for cord adiponectin, indicating the relative importance of cord adiponectin in ASD risk.
Findings from these studies lend further support for the early life origins of ASD and potential role of metabolic pathways in ASD; and if further confirmed, provide a basis to further explore whether the combination of infancy growth pattern and biomarkers such as leptin and adiponectin can help predict and prevent ASD earlier; and may serve as molecular targets for developing novel interventions.
Note: The Autism Longitudinal Data Project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant UJ2MC31074 Single Investigator Innovation Program (SIIP). The information, content and/or conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
