Resources available to the UR-IDDRC Human Phenotyping and Recruitment Core (HPR) resources, are outlined below:
The Department of Biostatistics and Computational Biology (DBCB)
The DBCB has a long record of excellence in methodological and collaborative research as well as in graduate education. Institutional and departmental resources include: a department faculty with multi-disciplinary expertise across the statistical and mathematical sciences; state-of-the-art computer equipment; experienced administrative and IT staff to support research and educational activities of the faculty; opportunities for collaboration with a wide array of research scientists and clinicians; and access to extensive print and electronic collections of statistical texts and journals through the University’s academic research libraries. IDDRC investigators will have full access to the facilities and resources of the DBCB in conducting research associated with the HPR Core or other Cores of the IDDRC.
Center for Advanced Brain Imaging and Neurophysiology (CABIN): Through the HPR Core, UR-IDDRC investigators have access to the child-friendly environment of the newly remodeled CABIN for clinical assessment activities. The Center for Advanced Brain Imaging and Neurophysiology (CABIN) is a 6,000 sq. ft. facility that houses a number of specialized neuroimaging laboratories affiliated with the departments of Brain and Cognitive Science on River Campus and the Department of Neuroscience in the School of Medicine and Dentistry. The facility has recently been upgraded and outfitted with quiet assessment spaces appropriate for detailed cognitive and behavioral assessment.
DBP Neurodevelopmental Research Suite: The Developmental and Behavioral Pediatrics Neurodevelopmental Assessment Suite is dedicated and reserved for the purposes of conducting IDD research and contains five treatment rooms designed for behavioral studies of children with intellectual and developmental disabilities and their families. It is located in a quiet corridor in the Saunders Research Building, home of the Clinical and Translational Science Institute at the UR Medical Center. This facility provides convenient, off-street parking, a comfortable, staffed family reception and waiting area, quiet testing rooms with child-friendly furniture, an observation room with two-way mirror, interview rooms for study teams to meet with parents and guardians, and ample locked storage space for testing equipment and materials. The testing facility incorporates Noldus Observer XT technology that provides the opportunity to collect, analyze, and present observational data for studies investigating specific classes of human behaviors (e.g., spoken language, self-injurious behavior). The DBP Neurodevelopmental Research Suite is one of the two primary assessment spaces for the HPR Core.
Clinical Research Center (CRC): The Clinical Research Center (CRC) was one of the oldest General Clinical Research Centers funded by the NIH, with continuous funding since the 1960s. It is now a component of the CTSI. This space consists of a combined adult and pediatric unit totaling 8,474 square feet in contiguous space. The CRC has two components located within the School of Medicine and Dentistry: an inpatient unit consisting of 4 beds and an outpatient area with 8 rooms to support outpatient procedures/studies. Both units share a staff of skilled nurses experienced in the implementation of sophisticated clinical studies. A primary nurse is assigned to each protocol and is available to work with investigators, their research nurse(s) and study coordinators throughout the course of the study. The CRC encourages and facilitates participation of volunteer subjects through its accessible location and dedicated parking. In addition, studies may be conducted in off-site locations as needed. The CRC expedites protocol initiation through specific training programs, dedicated staff assistance, and the co-location of administrative support functions in the CRC. Other resources available to investigators include a metabolic kitchen, DEXA, two rooms dedicated to muscle function testing and analysis and a room for glucose-clamp metabolic studies. Laboratory services are available including short term storage of samples. Study coordination services are also available for short- or long-term needs. This constellation of accessible support services in a dedicated environment ensures that investigators overcome the challenges attendant to clinical and translational patient-oriented research.
Affiliated Research Centers
University of Rochester Clinical and Translational Science Institute: The University of Rochester Clinical and Translational Science Institute (UR-CTSI) is the academic home for clinical and translational science at the institution, providing a centralized, integrated infrastructure.
Center for Health + Technology (CHeT): The URMC has established the multi-disciplinary Center for Health + Technology (CHeT) whose mission is to conduct hypothesis-driven, rigorously designed, initial investigations of novel therapeutic interventions for human diseases. This research center is focused on strengthening and augmenting the institution’s capabilities to conduct basic and clinical research projects that advance scientific discoveries to initial human experimentation in a safe and efficient manner, consistent with regulatory oversight.
Center for Community Health: The Center for Community Health provides consultation services related to community-engaged research. Services are offered to ensure that investigators have support for both project development and implementation in the community.
The UR Batten Center maintains an IRB-approved contact registry of individuals with NCL disorders; this resource will facilitate recruitment of CLN3 disease subjects for the Research Project supported by the HPR Core.
URMC maintains a local registry of volunteers interested in participating in clinical research and clinical trials. URMC investigators have access to this resource along with ResearchMatch, a national registry of research volunteers. Additionally, URMC’s Greater Rochester Practice-Based Research Network supports research engagement through primary care practices in our region. There are currently 85 practices in the network, including 40 pediatric practices, 14 family medicine practices, 17 internal medicine practices, and 4 med/peds practices. The member practices represent more than 150,000 children (80% of Monroe County). These resources will help to facilitate recruitment on behalf of IDDRC investigators by the HPR Core.