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The Children and Youth with Special Health Care Needs National Research Network (CYSHCNet) published a handbook to assist researchers in collaborating with people with lived experience to make research studies more relevant and meaningful. The handbook provides guidance to ensure that researchers, families, and patients work collaboratively on research studies in which all participants’ input is valued. This “how-to” guide covers topics such as power dynamics in research partnerships, recruitment and retention of participants, family-driven research and design, ethics, evaluation, and much more.

Access the handbook at