Home > Science > Updates from the Autism Treatment Network Registry: What Do We Know About Medical Issues in Autism?

Updates from the Autism Treatment Network Registry: What Do We Know About Medical Issues in Autism?

Guest Blogger: Nancy Jones, Autism Speaks ATN/CTN program director

Since its inception, IMFAR has been pivotal in promoting interest in autism research and disseminating findings. These have included findings from treatment studies and interdisciplinary research networks such as ACE, STAART and CPEA. The Autism Treatment Network (ATN) is a unique network that seeks to improve care for families and can serve as a platform for research. The ATN maintains a patient registry that had grown to over 2100 children who are seen for clinical care at the 14 ATN centers across the U.S. and Canada

The ATN reported new findings from its database on the use of psychotropic drugs, use of complementary and alternative medicine approaches, sleep and GI disorders. On Saturday, the ATN led an Invited Educational Symposium on medical co-morbidities. Chaired by Autism Speaks vice president of Clinical Programs, Clara Lajonchere, the panel featured presentations by George Fuchs, M.D. (GI specialist from UAMS; chair of the GI committee), Beth Malow, M.D. (sleep specialist from Vanderbilt University, chair of the sleep committee), Sarah Spence, M.D. (NIMH neurologist and external advisor to the ATN) and ATN Medical Director Dan Coury, M.D.

(View study abstracts and search “ATN” to find the four posters/presentations, learn more about the educational symposium and to see other work based on data from individual ATN sites.)

There are a number of key themes that emerged from the discussion of the findings:

  1. Rates of GI dysfunction (45%), sleep problems (65%), and psychopharm use (27%) in ASD from the ATN database are consistent with previous research and reports from clinical practice. This provides further confirmation to the need to continuing pursuing treatment and care standards for the issues.
  2. The diagnostic and treatment algorithms  (“decision trees” to guide physician diagnosis and treatment decisions) that are currently being piloted in the ATN will become the basis for guidelines that can be shared broadly amongst treating physicians, in partnership with professional medical societies. This could be a model for other developmental disorders.
  3. While not a research network, the ATN is poised to address research directly relevant to clinical care and treatment. Dr. Coury described six on-going studies including a randomized controlled trial of a sleep intervention, a large scale study of nutritional status, and recently launched studies on iron status and metabolism, bone density in children with ASD, the relation of sleep and psychiatric comorbidities, and identification of a specific metabolic disorder (creatine deficiency).
  4. In all the areas, there is still a great need for additional evidence to support the development of evidence-based standards. But findings to date help us several ways:
    • Presentations of these findings at meetings like IMFAR and at professional meetings such as NASPGHAN (GI), SLEEP, and the Pediatric Academic Society are helping raise awareness about these issues, and are informative for specialists with little knowledge or experience caring for children with ASD.
    • They also guide us towards key areas to pursue to support improvements in treatment and care: characterizing the nature of these medical disorders as they manifest in children with ASD; conducting large controlled trials of single treatments;  doing comparative effectiveness research to determine relative effectiveness of different types of treatment,  taking advantage of large datasets (such as ATN as well as genetic databases); disseminating our best evidence to the practicing physician community.

There is great hope in what can be done through the continued collaboration of clinicians, medical specialists, researchers and families. As Dr. Coury remarked, “We may face challenges, but the ATN is currently the only bi-national, multi-site care network of this type for autism. The power of this network is its members – not just the member hospitals and clinicians, but also the family and professional communities to which they are connected.” The contribution of each of our partners is essential to ensuring that top of the line care and the utmost respect is always given to ATN patients.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Categories: Science Tags: , , ,
  1. May 25, 2010 at 7:57 am | #1

    asthma, allergies, bowel problems, sinus infections, dietary problems (will only eat mac & cheese, chips, crackers ) otherwise gags, given resperdol and antidepressent since age four (now 12 years old) behaviors have improved but has crying jags. wonder if head hurts he can’t speak only yes and no and don’t know if he understands questions about how he feels. his drs seem to ignore health problems

  2. Katie Wright
    May 25, 2010 at 11:36 am | #2

    Joan, my child has the same problems. I agree progress needs to come faster. Addressing human suffering should be the foremost priority.

    ATN is a good start but without active parent involvement and leadership at a national and local level there will never be the same sense of urgency or first hand medical experience. I would never have believed autism could be this medically complex if I had not lived it with my son.

  3. Sarah
    May 25, 2010 at 10:27 pm | #3

    More, more, more mito/fod please.

    Thank you ATN/Autism Speaks.

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