Workshop Overview:

The purpose of this workshop is to bring together experts from various backgrounds and disciplines to explore research areas of high priority for youth regarding needed transition services/support as part of routine care. Given increasing coordination efforts on the topic of health care transition across the United States Department of Health and Human Services (HHS), the National Institutes of Health (NIH) is uniquely poised to coordinate health care transition research efforts as they relate to each Institute’s, Center’s, and Office’s (ICO) mission and vision.

With improved rates of survival in childhood illnesses in the United States and globally, individuals are living longer with one or more chronic conditions.ⁱ To meet the needs of diverse populations with chronic physical/medical conditions or intellectual/developmental disabilities as they transition from pediatric to adult centric services, barriers to successful health care transition (HCT), methods and measures for defining HCT, and the identification of promising practices must be better understood. Additionally, health care transition should consider the context of typical developmental processes during the transition to adulthood and the multiple domains of functioning that are critical to life success (e.g., schooling, work, housing).ⁱⁱ

Workshop Goals:

- Bring together researchers and clinicians representing a broad range of pediatric diseases and conditions to learn from each other and define the current state of health care transition research 

- Use this knowledge and experience from a broad range of conditions to:

•  Identify common themes and highlight shared research gaps and opportunities that can complement ongoing disease-specific work across NIH ICOs and collaborating organizations
• Further define the needs of youth with chronic physical/medical conditions or intellectual/ developmental disabilities in the context of health care transitions   
  
  

ⁱGlobal Burden of Disease Collaborative Network. Global Burden of Disease Study 2016 (GBD 2016) All-cause Under-5 Mortality, Adult Mortality, and Life Expectancy 1970-2016. Seattle, United States: Institute for Health Metrics and Evaluation (IHME), 2017.

ⁱⁱ Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., & Slap, G. B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine.Journal of Adolescent Health,14(7), 570-576 

Context:

The Trans-NIH Pediatric Research Consortium (N-PeRC) began in 2018 to provide a venue and opportunity for the National Institutes of Health Institutes, Centers, and Offices (ICOs) to harmonize activities related to pediatric research, explore gaps in the overall NIH portfolio, and share best practices to advance science across NIH. Given all NIH ICOs support some amount of pediatric research, efforts have concentrated on surveying the overall landscape of pediatric research and training at NIH to identify and articulate areas in which N-PeRC can collaborate to fill gaps or augment ongoing initiatives.

 As the first Subgroup resulting from the scientific priorities identified by the Trans-NIH Pediatric Research Consortium (N-PeRC), the Transition Subgroup was tasked with identifying federal and non-federal activities related to pediatric to adult healthcare transition research. The N-PeRC Transition Subgroup included representation from  multiple NIH Institutes and Offices, encouraging cross-disease expertise and collaborations. Identified in part by the portfolio analysis done by the N-PeRC Transition Subgroup, a variety of gaps and opportunities across chronic health conditions that affect child health and wellbeing remain for which transition research can synergize. Furthermore, the NICHD Strategic Plan for Fiscal Years (FY) 2020-2024 identified 'Improving Child and Adolescent Health and the Transition to Adulthood (Theme #4)' as a scientific area of interest over the next five years.

This workshop is a crucial next step to further identify research opportunities for collaboration across NIH and other agencies to ensure continuity of care during the transition from pediatric to adult healthcare.

WORKSHOP DATES AND TIMES:

Wednesday, September 30, 2020             
9:00am ‒ 4:45pm

Thursday, October 1, 2020                                               
9:00am  ‒  12:45pm                                                                                                    

This is a virtual workshop. You may access this workshop through the NIH Videocast website at the following links:

• September 30: https://videocast.nih.gov/watch=38570
• October 1: https://videocast.nih.gov/watch=38572

QUESTIONS?

For program related questions, please contact:

Dara R. Blachman-Demner, Ph.D.                     
Health Scientist Administrator                             
Office of Behavioral and Social Sciences Research (OBSSR)                                         
National Institutes of Health (NIH)       
email: dara.blachman-demner@nih.gov

Sonia Lee, Ph.D.                                                             
Health Scientist Administrator                                     
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)                                                             
National Institutes of Health (NIH) 
email:  leesonia@mail.nih.gov

For workshop website and logistical questions, please contact:

Monica Barnette, CMP, CGMP                     
Project Manager                                                                     
The Bizzell Group                                                   
email: mbarnette@thebizzellgroup.com