The Neurodevelopmental Phenotyping Program (NPP) is housed within the Division of Developmental Medicine, Department of Pediatrics at Indiana University School of Medicine and Riley Hospital for Children at Indiana University Health. We are also affiliated with the Indiana Leadership in Neurodevelopmental Disabilities (LEND) program. The overall objective of the NPP is to provide researchers both within and outside of Indiana University School of Medicine with access to a broad range of supports for conducting translational research focused on advancing precision medicine and genomic care of people with neurodevelopmental disabilities. Our program offers services such as consultation in the design and development of clinical and translational neurodevelopmental and behavioral disabilities (NDBD) research, recruitment of well-characterized participants with NDBDs, neurodevelopmental and behavioral phenotyping and assessment services, and training in NDBD assessment. We currently offer the following services:
- Research Consultation
- Study design/methods (for grant proposals or funded studies)
- Regulatory approval support
- Selection of neurodevelopmental measures and assessment tools
- Modification of tools/measures for NDD population or new measure development
- Data capture design and management
- Analysis, interpretation, and dissemination of NDD research
- Selection of appropriate medical genetic tests
- Selection of appropriate medical neuroimaging tests
- Research Recruitment
- Use of Developmental Medicine research registry for identification of participants that meet study enrollment requirements.
- Marketing of studies across IUSM/IUH clinics, community partners, and social media
- Study Coordination
- Patient scheduling
- Data collection and management
- Data reporting
- Neurodevelopmental evaluation of research participants (completed by Masters or doctoral level licensed clinician(s))
- Comprehensive diagnostic or psychological evaluations
- Administration of individual neurodevelopmental tests
- Speech language evaluations
- Medical evaluations and monitoring
- Genetic counseling for consent and delivery of results
- Establishing phenotype through chart review, family history, physical exam
- Identification of appropriate family members for further genetic studies
- Cascade testing
- Segregation analysis
- Training in Neurodevelopmental Assessment (training provided to Masters or doctoral level clinician(s))
- Administration and interpretations of screening tools, diagnostic measures, other neurodevelopmental assessment tools
- Training in clinical and research use of the ADOS-2
- Reliability and validity tracking
- Training in pedigree creation
- Intervention (conducted by Masters- or Doctoral-level licensed clinician with certification or training of MA or PhD level clinicians)
- Behavior Analysis
- Parent-Child Interaction Therapy
- Use of secondary data sets
- Electronic Health Record (EHR) data access, preparation/collection, and analysis
- Phenotyping registry data access, preparation/collection, and analysis
- Dataset preparation for analysis or sharing requirements
- Facility Use
- Clinical video system use/recording
The NPP works with investigators to determine the appropriate approach to collaboration based on the stage of project development, service needs, and funding source. Depending on these factors, our program will work with you to develop a contract for service provision. This contract agreement will include services provided, method of billing and cost estimate, study timeline, expectations for NPP acknowledgement and authorship (as appropriate).
Clinician/Staff FTE Buyout
FTE buyout of core faculty/staff is typically required for all federally funded or industry sponsored grants. The percentage of FTE buy-outs will cover administrative duties and research activities dependent upon the needs of your research project.
Fee for Service
In some cases, NPP will provide services on a Fee-for-Service basis to cover administrative and research activities. This model may be appropriate for initial consultation for protocol development, pilot studies or those with very small sample size, or focused training activities.
