Registry

What is the Autism Speaks Autism Treatment Network Registry?

As a network of 14 research medical centers, the AS ATN/AIR-P offers families autism diagnosis, ongoing care, and treatment options and much more. From these services, the AS ATN/AIR-P is able to maintain a patient registry that captures information around the care and progress on children with autism seen at the 14 centers.

The goal of the registry is to identify common medical conditions associated with ASD and their treatments and characterize the healthcare profile of children with ASD. Information on registry participants can also be used to formulate questions for additional research studies. The AS ATN/AIR-P’s research studies include primarily families participating in the AS ATN/AIR-P registry, and include information from the registry as part of the study data. See the  list of participating AS ATN/AIR-P centers.

What is a chronic disease registry?

A registry is an information system designed to effectively strategize and organize the care of individuals with chronic diseases.

To learn more about patient registry systems, visit:

Publications & eNewsletters

Our annual AIR-Perspectives eNewsletters present information on the acomplishments and achievements of the AS ATN/AIR-P. Click on any of the links below to read an issue:

2012 – Transition 2011 – Psychopharmacology Research 2010 – Introduction to the AIR-P

Publications

Read about our recent supplement publication to the medical journal Pediatrics. Below you will also find more information about our academic papers and abstracts published through 2012.

Pediatrics Supplement

ATN/AIR-P center eNewsletters

ATN Toronto Consortium, click here.

Children’s Hospital Los Angeles, click here.

University of Rochester, click here.

2013 ATN/AIR-P Publications

Click here for printer friendly version

Adkins KW, Goldman SE, Fawkes D, et al.A pilot study of shoulder placement for actigraphy in children.Behav Sleep Med. 2012; (manuscript accepted for publication).
Ameis S, Corbett-Dick P, Cole L, and Correll C.Decision Making and Antipsychotic Treatment for Youth with Autism Spectrum Disorders: Applying Guidelines in the Real World.
Journal of Clinical Psychiatry’s ASCP CornerCoury D, Jones N, Klatka K, Winklosky B, & Perrin J. Health care for children with autism.Curr Opin Pediatr;2009;21(6): 828–832.
Coury D. Medical treatment of autism spectrum disorders.Curr Opin in Neur;2010;23(2):131-6.
Coury D. Very little high-quality evidence to support most medications for children with autism spectrum disorders. J Pediatr. 2011; 159(5):872-3.
Coury DL. Review: little evidence of clear benefit for most medical treatments for children with autism spectrum disorders. Evid Based Ment Health. 2011; 14(4):105. Epub 2011 Sep 30.
Goldman S, McGrew S, Johnson K, Richdale A, Clemons T, & Malow B. Sleep is associated with problem behaviors in children and adolescents with Autism Spectrum Disorders.Res Autism Spectr Disord.2011; 5 (3): 1223-1229 doi: 10.1016/j.rasd. 2011. 01.010.
Goldman S, Richdale A, Clemons T, & Malow B. Parental sleep concerns in autism spectrum disorders: variations from childhood to adolescence.J Autism Dev Disord. 2011; (online first) DOI: 10.1007/s10803-011-1270-5.
Kanne SM, Mazurek MO, Sikora D, Bellando J, Branum-Martin L, Handen B, Katz T, Freedman B, Powell MP, Warren Z. The Autism Impact Measure (AIM): Initial Development of a New Tool for Treatment Outcome Measurement. Journal of Autism and Developmental Disorders (in press).
Kogan MD, Blumberg SJ, Schieve LA, Boyle CA, Perrin JM, Ghandour RM, Singh GK, Strickland BB, Trevathan E, & van Dyck PC. (2009) Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007.Pediatrics;124:1395–1403
Kuhlthau KA, Orlich F, Hall TA, Sikora D, Kovacs EA, Delahaye J, & Clemons T. (2010) Health Related Quality of Life in children with autism spectrum disorders. J Autism Dev Disord; 40(6):721-9
Malow BA, Adkins KW, Reynolds A, Weiss SK, Loh A, Fawkes D, Katz T, Goldman SE, PhD, Madduri N, Hundley R, Clemons T. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders (in press).
Perrin JM, Kolls JK, Coury DL. Evidence-based practice and health advocacy organizations. JAMA. 2011; 306 (13):1443.
Perrin JM. Children with special health care needs and changing policy. AcadPediatr.2011; 11:103-104.
Academic Papers and Abstracts through 2012

Quality Improvement

What is Quality Improvement and How Can it Help Autism Treatment? By Kristina Grifantini

Individuals with autism spectrum disorders (ASD) face more obstacles in accessing medical care than typically developing children. From both family experience and research studies, we know that families and individuals with ASD face challenges in getting the medical and subspecialty care they need. Patients sometimes face delayed or missed diagnoses or other difficulties when trying to get treatment. Often these problems are due to confusing or inefficient processes. But finding the best ways to reduce barriers to quality healthcare for patients can seem overwhelming.

At NICHQ (National Initiative for Children’s Healthcare Quality), we aim to bring quality improvement to children’s healthcare by using a systematic, evidence-based approach to implementing sustainable, positive changes in systems. Led by experienced pediatric professionals, we are a nonprofit organization that works with teams of practitioners, advocates, parents and patient partners across the country. Our aim? To make healthcare effective, accessible and safe for all children.

Process flow diagrams (or “algorithms”) are used to walk doctors and other care providers through the steps for diagnosing and treating a medical condition. They form part of a treatment “guideline” that may also include definitions and other notes to help the clinician.

One area that the NICHQ team is focusing on is the identification and treatment of physical health issues in children with ASD. Often, these conditions – such as constipation, seizures and insomnia – are not well understood or treated in this population. In 2008, NICHQ partnered with the Autism Treatment Network/Autism Intervention Research Network on Physical Health (ATN/AIR-P) to address these issues systematically. NICHQ helped the ATN/AIR-P to create process flow diagrams to standardize how doctors identify and manage these problems in individuals with ASD. Such flowcharts instruct doctors on what kind of treatment to provide if symptoms are present (for example, check diets in cases of constipation).

Now, in a project running from 2011 to 2013 and dubbed the “Collaborative to Improve Care for Children with Autism Spectrum Disorders,” NICHQ is working with teams from some of the ATN/AIR-P sites to improve the identification and management of constipation and insomnia symptoms that tend to occur in children with ASD. Doctors, nurses and care coordinators are working with local general practitioners to address this need. Another subset of site teams is working to improve access to care by reducing wait times for initial and follow-up visits to ATN sites.

The collaborative project also focuses on engaging parents in quality improvement work. As the users of these health services, parents are key contributors to ideas for improvement. Teams have begun to create local Parent and Family Advisory Councils (PFACs), in which parents discuss ideas for improvement at their clinical sites. Aside from PFACs, NICHQ also encourages teams to bring a parent partner into their work. The parent perspective is a vital part of the improvement process: parents provide a view of how it feels to experience the healthcare system from the point of view of the family.

NICHQ teaches a tried-and-true method of quality improvement. The method focuses on asking fundamental questions about what changes will lead to improvements. The process then tests small cycles of change called Plan-Do-Study-Act (PDSA) cycles. We advise healthcare teams to plan what change to make by gathering information about the problem and brainstorming solutions.They do the change for a set amount of time while recording data (such as answers from surveys) that will indicate a success or failure. Then, teams study the data to see if a meaningful change has been made (if patients’ positive responses have gone up, or if wait times for doctors’ visits have decreased, for example). Finally, armed with data, the teams act on what’s learned by ignoring, adopting or incorporating the change. It can take many PDSA cycles before an organization finds the change that works best.

Want to learn more about our QI work?

For more information about this project, please contact Shela Merchant at smerchant@nichq.org.

Webinar

Offering webinars to professionals, clinicians, providers, and families allows the AIR-P to disseminate critical information on its research findings, guideline developments, and tools to health professionals and the public, especially families impacted by ASD and other developmental disabilities.

What is a Webinar?

A “webinar” is a web-based training presentation, seminar or workshop. A webinar can be a live or a recorded presentation of a web-based event. Webinars allow AS ATN/AIR-P clinicians, researchers, and other presenters to share information on research, tool kit resources and increase knowledge on ASD and related issues.

 

For information on upcoming webinar events, please visit our webpage on “News & Events”

Guidelines

The AS ATN/AIR-P’s researchers and clinicians are working toward the development of clinical practice guidelines and algorithms for identifying and treating medical problems that often affect individuals with autism. The aim is to reach consensus and gather evidence about recommended practices for diagnostics, screenings, and treatments for autism and associated conditions.

We’ve been published in the official journal of the American Academy of Pediatrics

To access the Pediatrics Supplement and read more about our clinical guidelines work, click here to download a copy. In this publication, you will find information about our Insomnia, Constipation and ADHD symptoms in autism spectrum disorder guidelines recommendations.

 

Here’s what we’re working on for 2013-2014:

    • Identification and Treatment of Irritability & Agitation in ASD
  • Treatment for anxiety in children with ASD

 

Tools

The AS ATN/AIR–P is trying to raise awareness about our clinical and research activities. Our aim is to advance the care of children with ASD by making information available to parents, healthcare professionals and the wider community about the latest tools, strategies, practices, and findings, as they prove effective. Here you will find information on how the AS ATN/AIR-P is increasing knowledge and awareness to address medical conditions in autism through development of tool kits and availability of training opportunities through webinars.

Search through our section of tool kits and webinars to learn more. These can be found on the left side area of this page.

What is a tool kit?

“Tool Kit” is a set of print or electronic materials that contain educational tools designed to support families and providers of children affected by autism in the management of their care. Tool Kits may also be targeted directly to the children to educate them or support them in the management of their own care. Tool Kits provide information on a focused topic with a specific goal such as supporting a family in making a health related decision for their child with ASD. Examples of the AS ATN/AIR-P tool kits include:

ATN/AIR-P Medication Decision Aid

Many families of children with autism spectrum disorder (ASD) are faced with the option of using medicines to help treat their child’s challenging behaviors. This is a tough medical decision and there is no one right answer. Though many children with autism may benefit from medications that ease challenging behaviors, families often struggle with making the decision of whether medication use is right for their child. This is why the Autism Speaks’ Autism Treatment Network (ATN) created the Medication Decision Aid. It includes a family decision aid and answers to frequently asked questions—all designed to help you clarify your values and goals and then talk with your healthcare provider about the options, benefits, and possible downsides of medications. This tool kit can be used at any point in your decision-making process, including the re-evaluation of medications your child is now taking.
Download the Medication Decision Aid Tool Kit.

ATN/AIR-P Parent’s Guide to Toilet Training in Autism

Each child with an autism spectrum disorder (ASD) is different. But children with ASD have some common problems that can make toileting training hard for them. Knowing about these problems can help you come up with different ways to meet your child’s needs. This tool kit provides caregivers tips to increase toileting success by teaching toileting skills, providing advice on preparing schedules and routines and promoting visual supports.
Download the ATN/AIR-P Parent’s Guide to Toilet Training in Autism.

ATN/AIR-P Parent’s Guide to Applied Behavior Analysis

This tool kit is an informational guide to Applied Behavioral Analysis (ABA). It is designed to provide you with a better understanding of ABA, how your child can benefit, and where/how you can seek ABA services. ABA is a set of principles that form the basis for many behavioral treatments. ABA is based on the science of learning and behavior. ABA is considered an evidence-based “best” practice treatment by the US Surgeon General and by the American Psychological Association. “Evidence based” means that ABA has passed scientific tests of its usefulness, quality, and effectiveness.
Download the ATN/AIR-P Parent’s Guide to Applied Behavior Analysis.

ATN/AIR-P Sleep Tool Kit (Parent Booklet)

Many children with ASD have difficulty with sleep. This can be stressful for children and their families. This informational booklet is designed to provide parents with strategies to improve sleep in their child affected by autism spectrum disorders (ASD). The suggestions in this tool kit are based on both research and clinical experience of sleep experts.
Download the Sleep Tool Kit (Parent Booklet).

ATN/AIR-P Visual Supports and Autism Spectrum Disorder

The Visual Supports and Autism Spectrum Disorder tool kit provides a step-by-step, easy-to-understand introduction to visual supports and the ways that parents and other caregivers can begin using them. The pamphlet provides practical examples of how to begin integrating visual supports into a child’s daily routines. The tool kit provides actual visual supports for parents to print, cut out and use, along with links to resources that provide more detailed information for those who want to go further.

This tool kit is a result of on-going activities of the ATN and was developed with the support of a grant from the Health Resources and Services Administration to Vanderbilt University.
Download the Visual Supports and Autism Spectrum Disorder Tool Kit.