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CTC - Human Subjects Research Support

 

HSRS Coordinator

Ariana Kaci Ariana Kaci, MA, arianah@uw.edu

   

Human Subjects Research Support (HSRS)

The HSRS component is designed to assist CHDD 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 CHDD. The CHDD 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 CHDD 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.

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University of Washington • Center on Human Development and Disability Box 357920 • Seattle WA 98195-7920 USA • 206-543-7701 • chdd@uw.edu