Genetics Core

The BOL provides investigators with digital color video recording studios for observational research supported by a Noldus VISO system. Each room contains four small, unobtrusive digital remote-control AXIS M5525-E PTZ robotic color cameras and one ceiling microphone. A viewer computer in an adjacent room allows users to start/stop recordings and for control of the cameras pan-tilt-zoom functions. The Noldus VISO system captures feeds from the four cameras along with the audio file from the microphone and processes them into one synchronized file on the central server. Using the Noldus VISO annotation module, researchers can code files in real time or at a later time by accessing recorded sessions on the central server. Core staff provide consultation and training in the use of the Noldus VISO system to meet the unique needs of each study, allowing for high quality, archived digital video recordings that are easily accessible. The BEC also has an established testing facility onsite that integrates Eye Gaze Tracking (EGT; Smart Eye Pro 5.0 eye-tracking system (Smart Eye Inc., Sweden) and EEG technologies (Electrical Geodesics Inc. (Eugene, OR): EGI System 400).
The BEC also has a NOLDUS Ethovision System has been added as a resource available to IHDD affiliates. Integrated into the IHDD Clinic Building (Room 391) of the BOL is a ceiling mounted ETHOVISION camera for tracking movement through space over time. The software automatically tracks participants (by shirt color), providing x, y coordinates relative to the center of the room over time. The NOLDUS Ethovision System is a tool that allows for the direct translation of behaviors observed across species, movement through space over time. Historically, the NOLDUS system has served as a key measurement of rodent behaviors as is included in our Animal Behavior Core. The system at the IHDD Clinic Building allows for the tracking of human movement through space over time. The study of an individual’s movement relative to that of another person has implications for the study of social behavior, curiosity, and learning.

Behavioral Phenotyping

A critical service of the BEC component of the CTC consists of consultation and training on tests for behavioral phenotyping and outcome studies. Coordination of use of IHDD clinical and testing space for outcome studies is also part of this service. Consultations on test reliability, validity, feasibility, and any adaptations needed for individuals with IDD are provided. Resources of the BEC include materials and technical expertise in assessment in the domains of cognitive, achievement, and adaptive abilities; memory and language functioning; attention and executive functioning skills; motor development and visual perception; and mood and personality. Specific expertise in the gold standard diagnostic assessment tools for autism spectrum disorder (ASD) is also provided. This service provides consultation and support regarding the selection of behavioral and neurocognitive measurement tools as well as training and supervision of the administration of evaluative assessments. Supervision and support regarding the presentation of clinical findings and feedback to research participants, including written evaluation reports to be used for educational and treatment planning also is provided.

Cognitive Batteries
Wechsler Intelligence Scale for Children – Fifth Edition (WISC-V), Wechsler Abbreviated Scales of Intelligence – Second Edition (WASI-II), Wechsler Preschool and Primary Scale of Intelligence – Fourth Edition (WPPSI-IV), Wechsler Adult Intelligence Scale – Fourth Edition (WAIS-IV), Mullen Scales of Early Learning (Mullen), Differential Ability Scales—II (DAS-II), Stanford-Binet Intelligence Scales, Fifth Edition (SB-5), Raven’s Progressive Matrices (RPM), Leiter International Performance Scale, Third Edition (Leiter-3), Battelle Developmental Inventory 2nd Edition Normative Update (BDI-2 NU), Woodcock-Johnson IV Tests of Cognitive Abilities (WJ IV)

Adaptive Behavior Assessments
Vineland Adaptive Behavior Scales, Third Edition (Vineland-3), Adaptive Behavior Assessment Scale, Third Edition (ABAS-3)

Autism Related Diagnostic Measures and Tools
Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), Autism Diagnostic Interview, Revised (ADI-R), Broader Phenotype Autism Symptom Scale (BPASS), Social Communication Questionnaire (SCQ), Social Responsiveness Scale, Second Edition (SRS-2), Repetitive Behavior Scale-Revised (RBS-R), Communication and Symbolic Behavior Scales (CSBS), Autism Observation Scale for Infants (AOSI), Autism-Spectrum Quotient (AQ), Broad Autism Phenotype Questionnaire (BAPQ), Early Social-Communication Scales (ESCS), Brief Infant-Toddler Social Emotional Assessment (BITSEA), Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F), Screening Tool for Autism in Toddlers and Young Children (STAT), Social Skills Rating System (SSRS)

Language Measures
Comprehensive Assessment of Spoken Language, Second Edition (CASL-2), Peabody Picture Vocabulary Test, Fourth Edition (PPVT-4), Expressive Vocabulary Test, Second Edition (EVT-2), Clinical Evaluation of Language Fundamentals – Fifth Edition (CELF-5), Oral and Written Language Scales, Second Edition (OWLS-II), Comprehensive Test of Phonological Processing, Second Edition (CTOPP-2), MacArthur-Bates Communicative Development Inventories (CDI), Children’s Communication Checklist—2 (CCC-2), Preschool Language Scales, Fifth Edition (PLS-5), LENA

Motor Assessments
Movement Assessment Battery for Children – Second Edition (Movement ABC-2), Purdue Pegboard Test, Alberta Infant Motor Scale (AIMS), Beery-Buktenica Developmental Test of Visual-Motor Integration, Sixth Edition (Beery VMI), Wide Range Assessment of Visual Motor Abilities (WRAVMA), Developmental Coordination Disorder Questionnaire (DCDQ), Grooved Pegboard Test

Executive Function and Memory Tests
NEPSY – Second Edition (NEPSY-II), Behavior Rating Inventory of Executive Functioning (BRIEF), Delis Kaplan Executive Function System (D-KEFS), Wide Range Assessment of Memory and Learning, Second Edition (WRAML2), California Verbal Learning Test – Second Edition (CVLT-II), Wechsler Memory Scale – Fourth Edition (WMS-IV), Children’s Memory Scale (CMS)

Behavioral and Psychiatric Functioning Measures
Child Behavior Checklist (CBCL), Behavior Assessment System for Children, Third Edition (BASC-3), Aberrant Behavior Checklist (ABC), Children’s Depression Inventory 2 (CDI 2), Beck Depression Inventory (BDI), Conners 3rd Edition (Conners 3), Diagnostic Interview Schedule for Children (DISC-IV), Child and Adolescent Symptom Inventory—5 (CASI-5), Play Assessment Scale (PAS), Revised Children’s Manifest Anxiety Scale, Second Edition (RCMAS-2), Yale-Brown Obsessive Compulsive Scale (Y-BOCS), Multidimensional Anxiety Scale for Children 2nd Edition (MASC 2), Beck Anxiety Inventory (BAI)

Achievement Tests
Wechsler Individual Achievement Test – Third Edition (WIAT-III), Woodcock-Johnson IV Tests of Achievement (WJ IV)

To Use Our Services

Investigators who are interested in consulting with the Behavioral Evaluation Center should:
Read about the equipment and services we provide, then

• For information regarding Behavioral Testing Consulting Services and Patient Recruitment and Database Support, contact Sara Jane Webb, Director (sjwebb@uw.edu, 206-685-7585).
• For information on the BOL, see the BOL User Page.

Human Subjects Research Support (HSRS)

The HSRS component is designed to assist IHDD Research Affiliates to obtain access to specialized expertise in state-of-the-art tools for human subjects research. Resources for the HSRS component are jointly provided by IDDRC core staff and as part of our collaboration with the Institute for Translational Health Sciences (ITHS).

The HSRS Coordinator serves as the first point of contact for all HSRS service. The coordinator provides investigators with facilitated access to ITHS services, obtaining timely and appropriately directed appointments and helps to ensure service goals are clear between users and providers. The coordinator also helps ensure that budgeting for services is accurate. Key staff from other UW research units are also recruited as needed. Researchers interested in HSRS support should contact the coordinator. These services are as follows:

Applications to and Interactions with the Institutional Review Board.
The core provides investigators with advice and assistance during the generation of new applications as well as modifications to existing protocols. Investigators receive clear guidelines on changes in NIH policies regarding the use of institutional and multi-institutional IRBs as well as on the protection of human subjects in research that are especially relevant to IDD populations.

Biomedical Informatics and Electronic Health Records Data Mining
IDDRC investigators are provided guidance and training on how to utilize electronic health record (EHR) resources for accessing institutional and regional EHR resources for research, often developed and maintained within ITHS. They include on-line tools providing no barrier access to de-identified demographic and quantitative data as well as sophisticated data mining tools with natural language processing capabilities that can (with IRB approval) be used to identify individuals for study recruitment or track health care system data on enrolled and consented study subjects.

Study Subject Recruitment and Retention
The HSRS Coordinator can assist investigators in their interactions with clinical populations served by the clinics based at the IHDD. The IHDD University Center of Excellence in Developmental Disabilities (UCEDD) is a hub for clinical care in IDD at UW and our IDDRC also maintains close associations with clinics based at Seattle Children’s (often with shared clinical staffing). Additional clinical populations can be accessed through the UW Medical Center EHR with assistance from ITHS. Related tools for recruiting, enrolling, retaining, and facilitating the participation of research subjects with IDD are also shared on a web accessible space managed by the HSRS Coordinator.

Biostatistics
Expertise in statistical analysis of human subjects research is provided by ITHS in a fee-for-service model. The CTC hosts biostatistics “office hours” events where investigators can bring their study design and analysis questions for initial review and consultation by the ITHS biostatisticians. This enables many investigators to accurately budget for statistical services in advance of starting a project and/or determine if their statistical needs can be met with existing software and personnel.

Regulatory Review
The CTC maintains template regulatory documents for investigators dealing with federal regulatory agencies in their human subjects research. Core staff will continue to consult with affiliate investigators who need to interact with federal agencies and direct them to contacts in ITHS who have experience with similar types of review.

Community Outreach
Performing effective community outreach to ensure that the community of clinical providers as well as families and individuals with IDD are aware of the research activities at our IDDRC is an essential component of institutional success in human subjects research activities. The HSRS component works with investigators to make sure that their studies are communicated throughout the region using both IHDD and ITHS platforms and tools designed for community outreach.

Research Coordination
To facilitate research coordination by IDDRC affiliated research groups, the CTC has established a group of individuals working in research coordination called the IDDRC Research Coordination Network (RCN). Network members are staff and trainees from the research programs of IDDRC Research Affiliates who primarily manage and coordinate human subjects research activities. RCN activities include educational events, generating human subjects research tools and techniques used by multiple IDDRC affiliated groups and facilitating cooperation and collaboration between research coordinators working in IDDRC affiliated groups. The RCN meets several times per year with the goal of sharing experiences and pragmatic tools that network participants develop to facilitate human subjects research in populations with IDD. A shared web-based resource inventory of tools and educational resources has also been established by the RCN.

Translational Research Educational Program (TREP)

This CTC component focuses on targeted educational activities to meet the specific needs of: 1) individual investigators with specific projects whose translational efforts could be facilitated by CTC services; and 2) groups of investigators working to traverse specific phases of the translational research cycle using common approaches or studying common disorders.

Targeted Individual Outreach
This effort seeks to work with individual investigators following reviews of approved research abstracts and publications who are at a point in which they might benefit from individual targeted outreach with respect to furthering translational efforts of their research program. This effort also identifies critical phases on the path to research translation where IDDRC Research Affiliates will especially benefit from additional consultation and education. These include (but are not limited to) moving basic science findings into a preclinical therapy development program, turning clinical observations and understanding of pathophysiology into diagnostic or therapeutic biomarkers, and determining the process for disseminating research findings into clinical practice.

Targeted Group Outreach
When multiple investigators are identified as requiring common approaches at specific phases of the translational research cycle, we schedule small educational seminars for these specific groups and then initiate a more extensive process. Core staff will identify by resources specific to that phase of the translational cycle seminars for the group of affiliates. When targeted groups are organized around a specific disorder or syndrome, CTC staff will organize educational activities aimed at bringing researchers and clinical care providers together to foster collaboration and access to populations for research participation. Plans for the targeted outreach program in this instance include setting up an initial seminar with these groups in conjunction with other investigators.