Autism Speaks Autism Treatment Network Expands to 17 Sites in North America
Author: Autism Speaks : Contact: www.autismspeaks.org
Published: 2011-01-19 : (Rev. 2015-10-26)
Synopsis and Key Points:
Autism Speaks expansion of Autism Treatment Network to include 17 leading childrens hospitals and academic medical centers in the U.S. and Canada.
Autism Speaks, North America's largest autism science and advocacy organization, is pleased to announce the expansion of its Autism Treatment Network to include 17 leading children's hospitals and academic medical centers in the U.S. and Canada.
The Autism Speaks Autism Treatment Network (ATN) is committed to improving the health and healthcare for children and adolescents with autism spectrum disorders (ASD) through evidence-based research and practice. The ATN's long range mission is to build capacity in the community to provide all children and adolescents with ASD access to a high quality, comprehensive and multidisciplinary care model within their local communities. The ATN brings together the expertise of a multidisciplinary group of over 200 practicing physicians, nurses, specialized therapists, behavioral specialists, and clinical researchers to develop and disseminate novel treatments, practice guidelines and clinical tools for the wider community.
"The expansion of the ATN to include 17 of the leading clinical care sites in the US and Canada reflects a substantial commitment by the healthcare community to recognizing the importance of understanding the medical challenges that individuals with ASD face throughout their lives," said Clara Lajonchere, Ph.D., VP of Clinical Programs for Autism Speaks. "The dedication and commitment of these institutions to addressing the medical needs of our community is one of the network's greatest assets".
The ATN Care Model has at its heart a team of specialists with substantial experience in the diagnostic and medical evaluation and treatment of individuals with ASD, who partner with families and community health providers to provide care that is comprehensive and appropriate for the family's individual needs. This multi-disciplinary team approach includes specialists in developmental and behavioral pediatrics, neurology, child psychiatry, psychology, gastroenterology (GI), genetics, metabolics, and sleep disorders, as well as nurses, other therapists, social workers and care managers, supporting care management and coordination. The ATN is also dedicated to continuous improvement of care with a focus on streamlining care delivery, and the development of practice parameters/guidelines, decision aids, and other informational tools that can be made available to all families and clinicians, even those not located close to an ATN site. A new parent advisory board with representation from parents within and outside the ATN will provide guidance to the network on network activities and strategic directions.
"Autism Speaks ATN is where all our best efforts converge," stated Bob Wright, co-founder of Autism Speaks. "These sites are hubs of the most advanced autism research and clinical care, all supported by funds raised by hundreds of thousands of supporters at our Walks across North America. Our goal is to continue to expand this critical network to improve access to the most effective treatments and clinical care for as many families as possible, especially those living in medically underserved areas of the country."
With a well-established research infrastructure across multiple institutions and a large patient registry of 3200 individuals receiving care at the ATN sites, this multidisciplinary network of experts is uniquely positioned to also serve as a platform for cutting edge research to facilitate the discovery of novel interventions and effective therapeutics. Autism Speaks has leveraged its significant investments in clinical and research infrastructure to draw significant federal dollars from government agencies such as the Health Resources and Services Administration (HRSA) and the NIMH to support protocol-driven clinical research, guideline development and dissemination activities. Currently, the ATN is in its third year of a $12 million award from HRSA to serve as the Autism Intervention Research Network for Physical Health (AIR-P), which currently supports 11 active clinical research projects across the network. The NIMH also recently awarded funding for collection of bio-specimens at select ATN sites.
"The ATN offers the research community a platform for translational research within a real-world delivery setting that can accelerate the pace of ASD clinical research significantly" said Geri Dawson, Ph.D., chief science officer of Autism Speaks. "The network brings together leading researchers who can develop new ideas for future investigations to advance the field in areas that are critical to our families."
The ATN sites currently provide services to approximately 22,000 families with ASD each year, and all have taken critical steps to broaden the services available to all children in these centers as part of their ongoing commitment to the ATN model of care. "The expansion to 17 sites marks a major development in the ATN efforts to improve care for families with children with ASD and to bring even more clinicians and scientists into the efforts to do the research that will answer the questions that parents bring to doctors about their children with ASD," said James Perrin, M.D., pediatrician and Director of the ATN Clinical Coordinating Center at the Massachusetts General Hospital for Children. "The addition of a second site in Canada expands our reach in that country."
To learn out more about the Autism Speaks Autism Treatment Network please visit www.autismspeaks.org/atn or email: email@example.com (English and en Espaaol).
To learn more about ATN's research and quality improvement endeavors please visit www.autismspeaks.org/airp.
Autism Speaks Autism Treatment Network Participating Sites
Baylor College of Medicine/Texas Children's Hospital, Houston, Texas
PI: Diane Treadwell-Deering, M.D.
Baylor College of Medicine (BCM) is a founding site of the ATN which, together with Texas Children's Hospital (TCH), have offered their unique institutional strengths to support the ATN clinical mission. TCH is a tertiary-care teaching hospital that combines both primary care and specialty services under one organization, and in most cases a single building. The core clinic for the ATN is the Autism Center (AUC) at TCH whose vision is to provide coherent, organized assessment, treatment planning and follow-up care to children and families affected by autism spectrum disorders. An estimated 1,000 new patients representing all races and ethnicities are evaluated at TCH annually. The core clinic provides an integrated care delivery system that combines the resources of several medical departments as well as psychology, speech and language pathology, occupational and physical therapy and social work. This provides a system-wide evaluation and management model available to all patients in the system.
Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
PI: Patricia Manning-Courtney, M.D.
Cincinnati Children's Hospital Medical Center is one of the largest and busiest pediatric institutions in the country. The Department of Pediatrics at Cincinnati Children's is recognized as an international leader in pediatric health care and research. The Division of Developmental and Behavioral Pediatrics (DDBP), which houses the autism clinic is comprised of approximately 130 staff and faculty members, representing pediatrics, nursing, speech pathology, psychology, special education, occupational therapy, physical therapy, social work, child life, nutrition, and administration. The Kelly O'Leary Center for Autism Spectrum Disorders (TKOC) is a multidisciplinary diagnostic and treatment program that serves a large Midwest region with a population of over 2.2 million people. Since its inception, TKOC has embraced the chronic care model, following children with ASD after diagnosis for ongoing monitoring of progress, treatment of related medical issues, such as sleep and GI problems and educational and behavioral issues, medication treatment and monitoring when indicated, and through provision of rehabilitative services such as speech and occupational therapy, as well as behavioral treatment. TKOC sees approximately 600 children annually for autism evaluations and 2700 children with ASD annually for medical follow-up visits and treatment. TKOC provides an outreach coordinator and dedicated social worker who have developed a series of parent training opportunities, and are available to all families of children with ASD for more individualized support when needed.
Cincinnati will serve as one of the pilot bio-repository collection sites for the newly NIH-funded ATN Bio-repository grant, and also participates in the AIR-P nutrition study.
Columbia University , New York, N.Y.
PI: Agnes Whitaker, M.D.
The Developmental Neuropsychiatry Program (DNP) at New York Presbyterian Hospital-Columbia University Medical Center (NYPH-CUMC) has been a site for the Autism Treatment Network since 2005. The DNP was developed through the Department of Psychiatry, but integrates core services with Pediatric Neurology and Pediatrics. The DNP sees a highly diverse population including 17% Hispanic, 11% African-American, 11% Asian and 11% mixed race. In addition to their core ATN specialists in neurology, pediatrics, psychiatry, GI, sleep and genetics, Columbia offers highly qualified experts in pain and immunology. The site's designated neurology expert has been a leader in network efforts to develop EEG and MRI guidelines and provides site leadership for the recently funded, multi-site AIR-P epileptiform study.
Holland Bloorview Kids Rehab, Toronto, Canada
PI: Alvin Loh, M.D.
The Toronto ATN is comprised of three tertiary level centers and an established community-based service system known as the Toronto Autism Consortium led by Bloorview Kids Rehab. The centers exist within a coordinated infrastructure that serves a large ethnically-diverse population base through a publicly funded health care system. The autism network is thus part of a well-established larger network of general Pediatricians (more than 130) in addition to Developmental Pediatricians (25) and community-based developmental teams, all working in concert with a range of autism treatment supports and advocacy agencies in the region. The majority of autism diagnostic assessments for children in Toronto, (population 2.5 million) are provided by the developmental network. A full range of tertiary and quaternary medical sub-specialists are easily accessible through the Hospital for Sick Children in Toronto. The ATN Child Development teams also work in collaboration with community agencies in the provision of services for children and adults with ASD and their families. The majority of sub-specialist care for families enrolled in the ATN occurs at SickKids. Care is provided through sub-specialty clinics within the hospital including, Neurology, Sleep, Metabolics, Genetics, Gynecology, Gastroenterology, Immunology, Endocrinology, and Pain. The Toronto site provides leadership for several HRSA-funded AIR-P projects including toilet training, creatine deficiency in children with ASD and a study of regression in toddlers with ASD. They will also be participating in phase two of the AIR-P sleep intervention study.
Kennedy Krieger Institute ,Baltimore, Md.
PI: Rebecca Landa, Ph.D.
Kennedy Krieger Institute offers a multidisciplinary approach to serving the variety of needs experienced by children with developmental disabilities and was one of the nation's first University Affiliated Programs (UAP). The CARD was opened in 1995 to develop and implement evidence-based practices that enhance growth, community involvement, and overall well-being for children with autism and their families. CARD serves approximately 1200 (600 new) patients with ASD in the Washington, D.C. and Baltimore area. Children who are evaluated at CARD receive access to comprehensive, multidisciplinary evaluations that are tailored to meet child-specific goals. CARD coordinates assessments for patients in other KKI sub-specialty clinics including: Sleep, Gastroenterology and Nutrition, Neurogenetics, Behavior Psychology, Audiology, and Physical Therapy. In addition, patients have access to a wide variety of ancillary care services at CARD including: Occupational Therapy, Speech-Language Therapy, Behavioral Therapy, Family Therapy, Social Skills Intervention, Social Work, Genetic Counseling, and a variety of specialized interventions. KKI site will be participating in the recently funded AIR-P cholesterol study as well as a study of regression in toddlers in ASD.
Massachusetts General Hospital/Lurie Family Autism Center/LADDERS, Boston, Mass.
PI: Margaret Bauman, M.D.
The Learning and Developmental Disabilities Evaluation and Rehabilitation Services (LADDERS), a division of the Massachusetts General Hospital for Children (MGHfC), has been the model and a driving force behind the Autism Treatment Network. LADDERS is a multi-disciplinary medically driven evaluation and treatment program that combines diagnostic and on-going health care to children, adolescents and adults on the autism spectrum with therapy assessments and treatment, advocacy, and case management. In July of 2009, the LADDERS Program was integrated into The Lurie Family Autism Center through the generosity of Mrs. Nancy Lurie Marks and the Nancy Lurie Marks Family Foundation. The Lurie Center aims to bring comprehensive care together with advanced research to better meet the needs of autistic individuals from early childhood through adulthood. MGH/LADDERS has approximately 5000 patient visits annually and serves the entire New England area, eastern New York State and northern New Jersey. The clinic sees about 4000 patients per year with ASD. The clinic sees patients across their lifespan and has been a leader in developing services for adults. In addition to the their core ATN specialists in neurology, pediatrics, psychiatry, GI, sleep and genetics, they have established a network of specialists in the Boston area who work closely with the clinic staff to provide expertise in allergy, dermatology, otolaryngology, audiology, developmental optometry, urology, and neuro-endocrinology. LADDERS is the lead site in the AIR-P funded study on bone mineral density in ASD, and is participating in the creatine study and the study of epileptiform abnormalities.
Oregon Health & Science University, Portland, Ore.
PI: Darryn Sikora, Ph.D.
Oregon Health & Science University is one of the original five universities that have participated in the ATN since its inception. OHSU is Oregon's only academic health center. The ATN at OHSU functions within the Autism Program of the Child Development and Rehabilitation Center CDRC and the Department of Pediatrics, both housed within the School of Medicine. The CDRC is unique in that it houses three major service/research programs and also provides liaison and referral to community resources and coordination for some of these categorical groups as well as genetic diagnosis and counseling services. A Family Advocate meets all families of children who are receiving an initial diagnostic evaluation in clinic. Annually 1,035 children with ASD served through the various clinics including the Feeding Clinic, Genetics Clinic, and discipline specific therapies. Approximately 490 children were seen for an autism evaluation through the Autism Program. In addition to clinical services, CDRC houses one of more than 60 UCEDDs across the country that share the common mission of working to enhance the quality of life for persons with developmental disabilities through clinical service, education, research, and advocacy, and the Leadership Education in Neurodevelopment Disorders (LEND) program. OHSU will serve as one of the pilot biorepository collection sites for the newly NIH-funded ATN Biorepository grant. OHSU is a participating site in the study developing a new outcome assessment tool, and is the lead site for the cholesterol study.
University of Arkansas for Medical Sciences, Little Rock, Ark.
PI: Maya Lopez, M.D.
The University of Arkansas for Medical Sciences (UAMS) is the state's largest, most comprehensive facility for medical education, treatment, and biomedical research. Arkansas Children's Hospital (ACH) is the only tertiary care children's hospital in Arkansas and a major teaching affiliate of UAMS. Both UAMS and ACH serve a predominately rural state, with a diverse population of 2.5 million persons. The Dennis Developmental Center (DDC) a UAMS-sponsored interdisciplinary clinic is the only referral center in the state for diagnostic assessments of developmental and behavioral concerns from infancy to adolescence. It serves approximately 847 families with ASD annually. The Autism Multidisciplinary Sub-specialty Clinic at ACH provides ATN referral consultations for Genetics, Gastroenterology and Nutrition, Neurology and Sleep and was created especially for autism families to avoid the over-stimulating environment of regular hospital clinics and minimize appointment wait time. Specialists at the DDC including developmental/behavioral pediatricians, psychologists, pediatric nurse practitioners, clinical social workers, psychological examiners and speech/language pathologists have extensive experience in working with children with developmental disabilities, including autism. In addition to the ATN clinic, the Developmental Outreach Clinics provide community-based diagnostic, consultative and management services to children with identified or suspected ASD, developmental delay, or mental retardation. The ORCs are located in 11 different sites throughout the state for a total of 40 clinics and 500 children per year and is supported by a Federal match-agreement with DHS/Medicaid. The Arkansas site is part of the HRSA-funded AIR-P nutrition study, and a recently funded AIR-P study of regression in toddlers in ASD.
University of Colorado at Denver/Children's Hospital Denver, Denver, Colo.
PI: Ann Reynolds, M.D.
The University Colorado (UCD) School of Medicine Departments of Pediatrics and Psychiatry and the Children's Hospital of Denver (TCH) have a commitment to providing state-of-the-art clinical care to families of individuals with autism in the Rocky Mountain region. The University of Colorado ATN site brings together the Section of Neuro-developmental and Behavioral Pediatrics, the Child Development Unit (CDU) at TCH, and the JFK Clinic for Autism and Developmental Disorders which is part of JFK Partners University Center for Excellence in Developmental Disabilities (UCEDD). This system of care provides highly skilled, multi-disciplinary faculty with expertise in autism within a family-centered community based approach that encourages strong relationships with parent support and advocacy groups, and integrates treatment into real-life settings. The clinic serves 800 families annually and provides 515 ASD evaluations. The JFK center also has a collaborative relationship with the local Kaiser system to support autism evaluation and the development of a collaborative model of follow-up. The Colorado site is a participating site in the HRSA- funded nutrition study and has established a biorepository for subjects participating in the AIR-P Diet and Nutrition Study. The Colorado site is a participating site in the HRSA- funded nutrition study and has established a biorepository for subjects participating in this Diet and Nutrition Study. The PI is the lead of the AIR-P Iron Biomarker and Biorepository study examining the iron levels in children with ASD and its effect on health issues including sleep disorders, supported through the Intellectual and Developmental Disabilities Research Center (IDDRC) at UCD. The Colorado study also participates in the AIR-P sleep intervention study, the creatine deficiency study, and the recently funded cholesterol study.
University of Missouri at Columbia, Columbia, Mo.
PI: David Beversdorf, M.D.
The Thompson Center for Autism and Neuro-developmental Disorders (TC) at the University of Missouri, Columbia (MU) is a comprehensive multidisciplinary center that provides diagnostic, treatment and surveillance services for 700 children and youth with autism spectrum disorders (ASD) and their families each year. The clinical services provided by the TC include comprehensive diagnosis, medical management, neuropsychological assessments, occupational therapy, speech/language therapy, behavioral and educational support, early intervention programs, child and family counseling, and supports for the transition to adulthood for individuals with ASD and their families. Based on the chronic care model, TC diagnostic, assessment and treatment services emphasize family-centered care that is comprehensive, coordinated, compassionate, culturally sensitive, and accessible for all. Missouri has recently been funded through the HRSA- funded Autism Intervention Research Network for Physical Health (AIR-P) grant to develop a novel assessment for measuring ASD outcomes, and will serve as one of the pilot biorepository collection sites for the newly NIH-funded ATN Biorepository grant.
University of Pittsburgh, Pittsburgh, Penn.
PI: Benjamin Handen, Ph.D.
The Pittsburgh ATN site brings together three different programs within the University of Pittsburgh Medical Center. The Autism Center of Children's Hospital of Pittsburgh (CHOP) serves children ages 8 and under. The Center for Autism and Developmental Disorders is a specialized clinical program of Western Psychiatric Institute and Clinic (WPIC) / Department of Psychiatry and generally serves children of school age and older. The NIH Autism Center of Excellence (ACE) research provides state-of-the science research on the cognitive and neurological basis of ASD. Collectively, the Pittsburgh ATN offers: 1) comprehensive evaluations for children and adolescents suspected of autism; 2) a full range of behavioral services from early intensive behavioral interventions to school consultation; 3) referral coordination to a full array of pediatric sub-specialty areas and ancillary services; 4) management of psycho-pharmacology treatments; 5) family support services; and 6) extensive research opportunities. The Autism Center and the affiliated clinical service, Child Development Unit (CDU) serves 2000 new patients and diagnoses over 500 children with ASD annually. The Autism Center and CDU are staffed by developmental / behavioral pediatricians, psychologists, nurse practitioners and experienced research staff trained in the ADOS and ADI-R. As a division within the Department of Pediatrics, there is well-established access to other pediatric sub-specialty areas (sleep medicine, neurology, gastroenterology, genetics, immunology, and endocrinology) as well as ancillary services (speech and language, OT, PT, nutrition). The Center for Autism and Developmental Disorders in the Department of Psychiatry at WPIC provides comprehensive services to over 500 children and adolescents, 725 adult outpatients, and 500 in-patients annually. The total number of children and adolescents evaluated and/or treated within the two clinics represents 25-30% of those with ASD in the region. The Pittsburgh site is a participating center in the HRSA-funded AIR-P nutrition study and iron biomarker study.
University of Rochester, Rochester, N.Y.
PI: Susan Hyman, M.D.
The Golisano Children's Hospital at University of Rochester Medical Center (URMC) is a 124 bed academic tertiary care center that serves a large region of central and western New York State. The Kirch Developmental Services Center (KDSC) is the clinical services program within the Division of Neuro-developmental and Behavioral Pediatrics. KDSC is the primary diagnostic and specialty care service for children with ASD in western NY. Annually the center serves approximately 1117 ASD families and provides 744 ASD evaluations. The clinic serves 17 counties including the rural regions of western and central New York. In addition to their core specialists, the clinic offers access to occupational, physical and speech therapists, special educators, social workers, audiology, nutritional counseling and specialized dentistry. The University of Rochester has an active research portfolio related to autism that extends across the university and medical school. The University of Rochester ATN site is the lead site for the HRSA-funded Diet and Nutrition Study. The University of Rochester has participated in the NIH biorepository initiated through the STAART program, is contributing material to the biorepository at the University of Colorado funded through the HRSA CAA funds, and is contributing DNA samples to Ohio State for a study examining genetic factors that might predict drug response to atomoxetine. The site PI also serves on the autism committee for the American Academy for Pediatrics.
Vanderbilt University, Nashville, Tenn.
PI: Beth Malow, M.D.
The Vanderbilt ATN program represents a collaborative partnership between the Vanderbilt University Medical Center's (VKC) Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), the Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV), and the Departments of Pediatrics, Neurology, and Psychiatry. The clinics serve 929 children ASD annually and provide 689 autism evaluations from across the state of Tennessee. These clinics have established referral relationships with Vanderbilt's medical specialists in pediatrics, psychiatry, psychology, gastroenterology, metabolics/genetics, sleep, and epilepsy, all who have strong research collaborations with each other and with basic scientists to understand the interactions between medical conditions and autism. Through the TRIAD Resource Coordinators, who act in the role as initial case coordinators and parent advocates, parents are also put in touch with a variety of services including behavioral interventions, educational interventions, research opportunities, and community organizations (Autism Society of Middle Tennessee). The Vanderbilt Kennedy Center is a University Center for Excellence on Developmental Disabilities (UCEDD). The VKC UCEDD provides interdisciplinary pre-service training, long-term and intermediate, for graduate and undergraduate students in disability areas, primarily students from Vanderbilt University. Research is an integral part of this ATN site. Vanderbilt investigators are the lead PIs on a number of HRSA-funded research project including studies on correlations between sleep and co-morbid psychiatric disorders, relationship of epileptiform charges to cognition and behavior, and the intervention trial of sleep education. In addition, the site is consulting for the bone mineral density study. They also have a track record of experience with complex multi-site data collection activities, including site involvement in the Simons Simplex project, ongoing multi-site infant sibling consortium projects, participation in the toddler treatment network, and involvement in numerous clinical trials of medications for children with ASD. Vanderbilt will serve as one of the pilot biorepository collection sites for the newly NIH-funded ATN Biorepository grant.
Children's Hospital Los Angeles, Los Angeles, Calif.
PI: Michele Kipke, Ph.D.
Children's Hospital of Los Angeles (CHLA) is recognized throughout the United States and around the world for its leadership in pediatric and adolescent health and biomedical research CHLA serves approximately 1400 patients with ASD annually. The clinics conduct over 1600 screenings and identify 243 new ASD patients annually. There are two primary service units, or "autism clinics," at CHLA designed to specifically coordinate comprehensive care to children with ASD: the USC University Center for Excellence in Developmental Disabilities (UCEDD) and the Boone Fetter Clinic. The UCEDD was established in 1966 to care for children with special health care needs including ASD and other neuro-developmental and behavioral disorders. Today, through a contract with the Los Angeles County Department of Mental Health to serve low-income children (i.e., those with publicly funded insurance), the UCEDD provides over 45,000 visits annually for more than 5,000 patients, and boasts the largest number of bilingual Spanish-speaking mental health providers of any UCEDD serving mono/bilingual Spanish-speaking families. Through the UCEDD, a comprehensive range of services are provided including interdisciplinary and discipline specific assessment and follow-up, psychiatric consultation, medication management, parent/provider education, home visitation and case management for children with co-existing mental health needs with or without developmental disabilities. The approach to care and follow-up is identical at the UCEDD and Boone Fetter Clinic as clinical providers function at both sites. In 2008 the Boone Fetter Clinic was established as a diagnostic, clinical and research center committed to implementing state-of-the-science clinical and research activities to improve assessment and care for children with ASD or other neuro-developmental or behavioral disorders not served by the UCEDD.
Children's Hospital of Philadelphia, Philadelphia, Penn.
PI: Amanda Bennett, M.D., MPH
ATN site will be based at the Children's Hospital of Philadelphia (CHOP) and University of Pennsylvania (PENN). The ATN site will be based in the Autism Collaborative Care (ACC) clinic at CHOP, which will integrate the Regional Autism Center (RAC) clinical programs and the Center for Autism Research (CAR) activities, combining comprehensive, multidisciplinary clinical care to a large ethnically and socioeconomically diverse patient population with the world class research infrastructure of CAR, CHOP, and the University of Pennsylvania (PENN). CHOP is the community hospital and primary care center for children in West Philadelphia and a major tertiary care referral center for the greater Delaware Valley region (NJ, DE, and PA) Since 1998, the Regional Autism Center has evaluated more than 4000 children with ASD from Southeastern Pennsylvania and surrounding areas, and more than 10,000 children with ASD have been seen for medical reasons at CHOP (either at the main hospital or at one of our more than 40 satellite sites). RAC is the primary outpatient provider for children with ASD at CHOP and an established, highly respected clinical site with high quality interdisciplinary diagnostic assessment and excellent community relationships. The Center for Autism Research (CAR) was established at CHOP in 2008 as one of 9 "centers of emphasis" within CHOP's Research Institute.
Nationwide Children's Hospital, Columbus, Ohio
PI: Eric Butter, Ph.D.
The Nationwide Children's Hospital (NCH) Child Development Center provides a comprehensive, coordinated, multi-disciplinary care model for children with ASD which provides 1500 screenings annually and provides on-going care to more than 1200 families annually. Developmental Pediatrics, Psychology, and Neurology work closely together within their clinical programs providing interdisciplinary care alongside ancillary services such as speech therapy and other behavioral interventions. Collaborative relationships are also established with autism-oriented specialists in Genetics, Sleep Medicine, Gastroenterology, Nutrition, and Psychiatry. The Child Development Center has a comprehensive autism treatment program, the Center for Autism Spectrum Disorders (CASD), to which many children are referred following our interdisciplinary diagnostic assessment. On-going care and follow-up is provided through this program as well as their medical clinics. The center's Autism Academy and other outreach activities provide parent and community education about autism and related medical problems. Autism Resource Coordinators assist families with navigating the system of care as well as those services available in the community, including cultural relevant materials for the region's large Somali minority population. This effort includes a significant amount of provider education around Somali culture and frequent work with Somali interpreters, and community leaders.
University of Alberta/Glenrose Rehabilitation Hospital, Edmonton, Canada
PI: Lonnie Zwaigenbaum, M.D.
The ATN center is a partnership of the Glenrose Rehabilitation Hospital (GRH) and the Stollery Children's Hospital (SCH). The multidisciplinary Autism Follow-up Clinic (AFC) works collaboratively with regional assessment programs at the GRH and with community partners serving children, youth and their families in Northern and Central Alberta. The AFC has an established working relationship with the SCH specialists in Pediatric Sleep Medicine, Genetics/Metabolics, Neurology, and Gastroenterology. The GRH Autism Follow-up Clinic (AFC) has provided child and family-centered medical follow-up for patients with ASD from the catchment area of Northern and Central Alberta as well as the Northwest Territories (total population over 2.5 million) for the past 15 years. The AFC receives referrals from other GRH programs and externally from community-based specialists and families moving from other regions, and thus provides a single point of entry for follow-up services. The center receives over 1500 referrals and diagnoses 212 new patients per year. 1600 patients are served annually for on-going services. The AFC provides single point entry to child- and family-centered multidisciplinary follow-up that addresses both developmental and medical issues, in partnership with community physicians and pediatric sub-specialists, and in collaboration with community-based service providers who provide much of the child's intervention programming. The Autism Research Center at the GRH focuses on clinically relevant research on early developmental trajectories, family experience and genetics.
Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention has called autism a national public health concern whose cause and cure remain unknown.
About the Autism Speaks Autism Treatment Network
The Autism Speaks' Autism Treatment Network (ATN) is the nation's first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN offers families care from doctors highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community. The ATN provides direct patient care through comprehensive, coordinated care model at its network of collaborative clinical teams providing ongoing care to children and families, whose clinicians are experienced in treating autism and associated disorders. The ATN works to develop and share best practices to improve care, developing standards and guidelines for evaluating and treating physical conditions associated with autism, and to sharing these standards with a wide variety of other clinical programs, utilizing its common protocol for a multidisciplinary and comprehensive evaluation of children with autism. In addition, the ATN maintains a patient registry, a database of anonymous clinical data about participating families and patients that can be used to evaluate and track patient care in network facilities. ATN clinicians also conduct clinical research projects directly aimed at improving children's health and healthcare, serving as the Autism Intervention Network for Physical Health (AIR-P) for the Health Services and Resources Administration's (HRSA) Combating Autism Act Initiatives.
About Autism Speaks
Autism Speaks is North America's largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $142.5 million to research through 2014 and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning "Learn the Signs" campaign with the Ad Council has received over $258 million in donated media. Autism Speaks' family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 23 states thus far, with bills pending in an additional 14 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org
About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners, Chairman and CEO of the Palm Beach Civic Association and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, such as the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received numerous awards such as the first ever Double Helix Award for Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National Health Leadership Award and The American Ireland Fund Humanitarian Award. In May of 2010 they received Honorary Doctor of Humane Letters Degrees from St. John's University in Queens and delivered the commencement address as the first married couple to be bestowed such an honor.
- 1 - Risk of Autism Among Younger Siblings of a Child with Autism : Autism Speaks (2011/08/15)
- 2 - Autism Risk in Siblings of Children with Autism Spectrum Disorders : IntegraGen (2012/05/17)
- 3 - Social Benefits of Being a Girl with Autism : Yale University (2016/02/09)
- 4 - Sounds Help Children with Autism Develop Speech and Gestures : University of Gothenburg (2016/02/25)
- 5 - Accessing Services a Huge Problem for Parents of Children with Autism : Queen Mary, University of London (2016/03/15)
- 6 - Obesity Rate Difference in Children With and Without Autism : Tufts University, Health Sciences Campus (2016/10/17)
- 7 - Shakespeare Helps Children with Autism Communicate : Ohio State University Wexner Medical Center (2016/10/13)
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