June 17, 2016

Healthcare worker with patientNINR Director Dr. Patricia A. Grady, along with Dr. Jeri Miller, Chief of NINR’s Office of End-of-Life & Palliative Care Research (OEPCR), and Dr. Lynn Adams, also of OEPCR, have co-authored “The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions” for the Journal of Palliative Medicine. The paper, published ahead of print, is now available on the journal’s website: http://online.liebertpub.com/doi/pdf/10.1089/jpm.2015.0464.

The paper reports on an interdisciplinary workshop held in June 2015 that was co-sponsored by NINR and the National Center for Advancing Translational Sciences Office of Rare Diseases Research. The workshop addressed the challenges of caregiving and palliative care for adults and children with rare diseases.

Workshop participants identified knowledge gaps for addressing palliative care among individuals with rare diseases and identified research areas to address these gaps, which are summarized in the article.

In the paper the authors note, “The workshop provided a forum to identify research opportunities to move forward and build, over time, a spectrum of palliative care across the trajectory of illness focused on personalized approaches to the care of individuals, caregivers, and families facing rare diseases.”


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