Investigators at the Yale Child Study Center are conducting research on the potential effectiveness of brain activity biofeedback in reducing tics. The study has received institutional review board approval. I am posting the text of the recruitment notice they sent to me:
I am writing to tell you about a new study testing an investigational biofeedback treatment for Tourette Syndrome and Chronic Tic Disorder that will be conducted at the Yale School of Medicine. As a care provider, you may wish to consider whether this novel treatment, and registered clinical trial, could benefit adolescents presenting with Tourette Disorder or Chronic Tic Disorder. We are currently recruiting adolescents aged 11-19 who have active tics.
In collaboration with the Yale Child Study Center, this multi-departmental and NIH-funded study is led by Dr. Michelle Hampson in the Department of Diagnostic Radiology. The purpose of this study is to determine whether individuals can gain control over a region of their brain known as the supplementary motor area when provided with feedback about activity in that brain region, and to investigate if increased control over the brain area translates into an improvement in tic symptoms.
Participation in this study does require a substantial commitment of time. Over a period of approximately one month, participants will be asked to come to the Yale School of Medicine for eight visits, seven of which will involve a functional magnetic resonance imaging (fMRI) session. Participants will receive financial compensation for their time and those that live more than 30 miles away may be eligible for travel reimbursement. The payment for each fMRI session is $80; these typically take around an hour. We also pay $20 per hour for clinical assessments, etc, that are conducted over the course of the study. We estimate that those who complete the study will receive approximately $600 total for their participation (not including any travel reimbursements).
I hope you will share information about this study with anyone who may be interested and eligible. I have enclosed an additional sheet detailing inclusion and exclusion criteria for the study as well as a recruitment flyer that could be posted on a bulletin board, or shared privately with potential participants and family members. In addition to those who currently qualify we are also interested in individuals who are likely to meet criteria before the study concludes in 2017.
You can download a copy of the flyer for the for the study with their contact information here. The inclusion/exclusion criteria for the study are:
- Diagnosis of Tourette Syndrome or Chronic Tic Disorder
- currently active tics
- aged 11-19
- ability to execute most common tics without moving head while lying on back
- Blindness (because feedback is provided visually)
- Lifetime diagnosis of pervasive developmental disorder, bipolar disorder, or psychotic disorder.
- Presence of any serious psychiatric or psychosocial condition requiring initiation of new treatment or change in current treatment.
- Unwillingness to keep medication stable over the course of the intervention
- Neurological conditions affecting central nervous system
- Change in medication in the month prior to beginning the study
- Full braces (but some retainers are OK)
- Claustrophobia of a degree that they cannot comfortably be scanned
- If common tics involve dramatic changes in breathing that could alter blood oxygenation measurements
- Inability to keep head still while executing most common tics
- Inability to keep head still in mock scanner
- Inability or unwillingness to understand or follow the instructions
- Pregnancy or possible pregnancy
- Subjects may also be excluded after the first MR scan if we are unable to localize a region of their supplementary motor area involved in tics – leaving us without a target area for biofeedback.
I am delighted to let everyone know that a new comprehensive book on Tourette Syndrome is available from Oxford University Press. Sheryl Pruitt and I were honored to be asked to write the chapter for educators. The book, Tourette Syndrome, is edited by Davide Martino and James F. Leckman. Here is the table of contents:
SECTION 1 CLINICAL PHENOMENOLOGY and EPIDEMIOLOGY
Chapter 1 Phenomenology of tics and sensory urges: the self under siege
James F Leckman, Michael H Bloch, Denis G Sukhodolsky, Lawrence Scahill, Robert A King (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 2 The phenomenology of attention deficit hyperactivity disorder in Tourette syndrome
Aribert Rothenberger (University of Gottingen, Germany) and Veit Roessner (University Medical Center, Dresden, Germany)
Chapter 3 The phenomenology of obsessive-compulsive symptoms in Tourette syndrome
Ygor A Ferrao (Universidade Federal de Ciencias de Saude de Porto Alegre, Brazil), Pedro G de Alvarenga, Ana G Hounie, Maria Alice de Mathis, Maria C de Rosario and Euripedes Miguel (University of Sao Paulo Medical School, Brazil)
Chapter 4 Other psychiatric co-morbidities in Tourette syndrome
Danielle Cath (Utrecht University, The Netherlands) and Andrea Ludolph (University of Ulm, Germany)
Chapter 5 Clinical course and adulthood-outcome in Tourette syndrome
Michael Bloch (Yale Child Study Center, New Haven, CT, USA)
Chapter 6 Prevalence and methods for population screening
Lawrence Scahill (Yale Child Study Center, New Haven, CT, USA) and Soren Dalsgaard (Denmark)
SECTION 2 ETIOLOGY
Chapter 7 Genetic susceptibility in Tourette syndrome
Thomas Fernandez and Matthew W State (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 8 Perinatal adversities and Tourette syndrome
Pieter J Hoekstra (University of Groningen, The Netherlands)
Chapter 9 Infections and tic disorders
Tanya K Murphy (University of Florida College of Medicine, Gainesville, FA, USA)
SECTION 3 PATHOPHYSIOLOGY
Chapter 10 Cellular and molecular pathology in Tourette syndrome
Flora M Vaccarino, Yuko Kataoka and Jessica Lennington (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 11 Electrophysiology in Tourette syndrome
Michael Orth (University of Ulm, Germany)
Chapter 12 Neurobiology and functional anatomy of tic disorders
Deanna J Greene, Kevin J Black, Bradley L Schlaggar (University of Washington, St. Louis, MO, USA)
Chapter 13 The Neurochemistry of Tourette syndrome
Harvey S Singer (Johns Hopkins University School of Medicine, Baltimore, MD, USA)
Chapter 14 Immunity and stress response in Tourette syndrome
Davide Martino (Queen Mary University of London, London, UK)
Chapter 15 Animal models of tics
Kevin W McCairn, Yukio Imamura and Masaki Isoda (Okinawa Institute of Science and Technology, Okinawa, Japan)
SECTION 4 DIAGNOSIS AND ASSESSMENT
Chapter 16 Wither the relationship between etiology and phenotype in Tourette syndrome?
Mary M Robertson (St. George’s Hospital and Medical School, London, UK) and Valsamma Eapen (University of New South Wales, Sydney, Australia)
Chapter 17 The differential diagnosis of tic disorders
Roger Kurlan (Atlantic Neuroscience Institute, Summit, NJ, USA)
Chapter 18 Comprehensive assessment strategies
Robert A King and Angeli Landeros-Weisenberger (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 19 Clinical rating instruments in Tourette syndrome
Andrea E Cavanna and John CP Piedad (University of Birmingham, Birmingham, UK)
Chapter 20 Neuropsychological assessment in Tourette syndrome
Tara Murphy (Great Ormond Street Hospital for Children, London, UK) and Clare Eddy (University of Birmingham, Birmingham, UK)
Chapter 21 Social and adaptive functioning in Tourette syndrome
Denis G Sukhodolsky, Virginia W Eicher and James F Leckman (Child Study Center, Yale University, New Haven, CT, USA)
SECTION 5 TREATMENT
Chapter 22 Psychoeducational interventions: what every parent and family member needs to know
Eli R Lebowitz and Lawrence Scahill (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 23 Cognitive-behavioural treatment for tics
Matthew R Capriotti and Douglas W Woods (University of Wisconsin, Milwaukee, WI, USA)
Chapter 24 Pharmacological treatment of tics
Veit Roessner (University Medical Center, Dresden, Germany) and Aribert Rothenberger (University of Gottingen, Germany)
Chapter 25 Treatment of psychiatric co-morbidities in Tourette syndrome
Francesco Cardona (University of Rome “La Sapienza”, Rome, Italy) and Renata Rizzo (University of Catania, Catania, Italy)
Chapter 26 Surgical treatment of Tourette syndrome
Mauro Porta, Marco Sassi and Domenico Servello (IRCCS Galeazzi, Milan, Italy)
Chapter 27 Alternative treatments in Tourette syndrome
Beata Zolovska and Barbara Coffey (NYU Child Study Center, New York City, NY, USA)
SECTION 6 RESOURCES & SUPPORT
Chapter 28 Information and social support for patients and families
Kirsten Muller-Vahl (Hannover Medical School, Hannover, Germany)
Chapter 29 Information and support for educators
Sheryl K Pruitt (Parkaire Consultants, Marietta, GA, USA) and Leslie E Packer (Independent Practice, North Bellmore, NY)
Chapter 30 Tourette syndrome support organisations around the world
Louise Roper (University of Birmingham, Birmingham, UK), Peter Hollenbeck (Purdue University, West Lafayette, IN, USA) and Hugh Rickards (University of Birmingham, Birmingham, UK)
Speech Emerges In Children On The Autism Spectrum With Severe Language Delay At Greater Rate Than Previously Thought
New findings published in Pediatrics (Epub ahead of print) by the Kennedy Krieger Institute’s Center for Autism and Related Disorders reveal that 70 percent of children with autism spectrum disorders (ASD) who have a history of severe language delay, achieved phrase or fluent speech by age eight. This suggests that more children presenting with ASD and severe language delay at age four can be expected to make notable language gains than was previously thought. Abnormalities in communication and language are a defining feature of ASD, yet prior research into the factors predicting the age and quality of speech attainment has been limited.
The study used the largest sample to date to examine the relationship between key deficits associated with ASD and attainment of phrase and/or fluent speech following a severe language delay, characterized by a child not putting words together into meaningful phrases by age four. As a common milestone of speech development, phrase speech is defined as using non-echoed three-word utterances that sometimes involve a verb and are spontaneous meaningful word combinations; whereas fluent speech is defined as the ability to use complex utterances to talk about topics outside of the immediate physical context.
“We found that nonverbal intelligence was the strongest predictor of phrase speech, while social interest and engagement were as robust, if not greater, when predicting the age that children attained phrase speech and fluent speech,” said Ericka L. Wodka, Ph.D., a neuropsychologist in Kennedy Krieger’s Center for Autism and Related Disorders and lead study author. “Children with typical nonverbal intelligence attained language almost six months ahead of those with scores below the average.”
These findings reinforce that core abilities, such as nonverbal intelligence and social engagement, have a greater influence on the development of communication than other behaviors associated with ASD, such as repetitive and abnormal sensory behaviors. “Our findings continue to support the importance of considering both nonverbal intellectual level and social communication in treatment planning, highlighting the differing impact of these factors as related to treatment goals,” said Dr. Wodka.
Data for this retrospective study were from the Simon Simplex Collection (SSC), a unique multi-site database project that gathers biological and phenotypic data on children with ASD aged four- to eighteen-years-old without a previous genetic history of ASD. The database establishes a permanent repository of genetic samples from 2,700 families, each of which has one child affected with an ASD and unaffected parents and siblings.
From the SSC, a total of 535 children, ages eight years or older, were studied. Using the Autism Diagnostic Interview-Revised (ADI-R), a standard parent-interview that distinguishes children with ASD from non-ASD populations, and the Autism Diagnosis Observation Schedule (ADOS), a clinician-administered observation that assesses social, communicative and stereotyped behaviors, researchers selected children because they either had no phrase speech at their time of enrollment in the SSC or their phrase speech onset occurred after age four. Based on ADI-R results and their language presentation, children in this study were administered one of four evaluation modules – no words or single words (Module 1), phrase speech (Module 2) or fluent speech (Module 3 or 4). Of the 535 participants in the study, 119 children mastered phrase speech and 253 children were speaking fluently by their eighth birthday, while 163 children never attained phrase or fluent speech
“We hope the results of this study empower parents of children with autism and severe language delays to know that, with the appropriate therapy, a child will likely make significant gains in this area over time; however, progress should be expected to be slower for those children with lower intellectual abilities,” said Dr. Wodka. “Additionally, we hope these findings provide clinicians with better defined therapeutic targets for their patients with autism.”
Future longitudinal studies, including both simplex and multiplex families, are required to fully capture the prevalence and predictors of language development in children with ASD. Additionally, further research into the impact of social cognition strategies (e.g., perspective taking) on the development of language, as well as the relationship among specific social deficits and fluent speech development, may hold important implications to the design of intervention.
Source: Kennedy Krieger Institute
Thanks to Sue Marinez for alerting me to this report.
This may be the most exciting research report I’ve read in years, and happily for everyone, it’s available for free online in full-text version. The authors of the study are Ravi Bansal, Lawrence H. Staib, Andrew F. Laine, Xuejun Hao, Dongrong Xu, Jun Liu, Myrna Weissman, and Bradley S. Peterson:
Here’s part of the Abstract from their report, below. This is obviously somewhat technical, but I know that some of my blog readers aren’t afraid to tackle the more technical research:
We have developed an automated method to diagnose individuals as having one of various neuropsychiatric illnesses using only anatomical MRI scans. The method employs a semi-supervised learning algorithm that discovers natural groupings of brains based on the spatial patterns of variation in the morphology of the cerebral cortex and other brain regions. We used split-half and leave-one-out cross-validation analyses in large MRI datasets to assess the reproducibility and diagnostic accuracy of those groupings.
In MRI datasets from persons with Attention-Deficit/Hyperactivity Disorder, Schizophrenia, Tourette Syndrome, Bipolar Disorder, or persons at high or low familial risk for Major Depressive Disorder, our method discriminated with high specificity and nearly perfect sensitivity the brains of persons who had one specific neuropsychiatric disorder from the brains of healthy participants and the brains of persons who had a different neuropsychiatric disorder.
Although the classification algorithm presupposes the availability of precisely delineated brain regions, our findings suggest that patterns of morphological variation across brain surfaces, extracted from MRI scans alone, can successfully diagnose the presence of chronic neuropsychiatric disorders. Extensions of these methods are likely to provide biomarkers that will aid in identifying biological subtypes of those disorders, predicting disease course, and individualizing treatments for a wide range of neuropsychiatric illnesses.
You can download the full article (.pdf, 4.2M)
Citation: Bansal R, Staib LH, Laine AF, Hao X, Xu D, et al.(2012) Anatomical Brain Images Alone Can Accurately Diagnose Chronic Neuropsychiatric Illnesses. PLoS ONE 7(12): e50698. doi:10.1371/journal.pone.0050698
Editor: Wang Zhan, University of Maryland, United States of America
Received April 18, 2012; Accepted October 25, 2012; Published December 7, 2012
Copyright: 2012 Bansal et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
And speaking of maternal smoking during pregnancy, here’s a study that suggests it may be a contributing or exacerbating factor in the explosive outbursts sometimes known as “rage attacks,” “storms,” or “meltdowns.” I discuss “rage attacks” on my main web site, here.
In a study published in Psychiatry Research, Drs. Chen, Budman, Diego Herrera, Witkin, and their colleagues looked at the rate of explosive outbursts in two samples of individuals with TS and comorbid disorders. One sample, consisting of 114 individuals, was from the U.S. and the second sample was from Costa Rica (CR).
From the abstract (emphasis added by me):
Twenty percent of participants had explosive outbursts, with no significant differences in prevalence between the CR (non-clinical) and the US (primarily clinical) samples. In the overall sample, ADHD, greater tic severity, and lower age of tic onset were strongly associated with explosive outbursts. ADHD, prenatal exposure to tobacco, and male gender were significantly associated with explosive outbursts in the US sample. Lower age of onset and greater severity of tics were significantly associated with explosive outbursts in the CR sample. This study confirms previous studies that suggest that clinically significant explosive outbursts are common in TS and associated with ADHD and tic severity. An additional potential risk factor, prenatal exposure to tobacco, was also identified.
I’m somewhat surprised that OCD and mood disorders weren’t also significantly correlated in their sample, but I haven’t seen their sample descriptions to know how much data they had on OCD and mood. Other than that, their results are generally very consistent with what I’ve seen in my clinical practice.
Carousel image: There are multiple pathways to a “storm.” From Challenging Kids, Challenged Teachers, copyright 2010. All rights reserved.