Children with sickle cell disease suffer from episodes of severe, unrelenting pain. Limited novel therapeutic options for sickle cell pain have been developed in the last 25 years and there are currently no valid pain assessment tools, nor adequate analgesic options for children hospitalized with vasoocclusive pain. The candidate's long-term goal is to become an independent investigator, and an expert and national leader in sickle cell disease pain management. To achieve this goal the candidate will receive advanced training in research methodology culminating in a Masters in Clinical Research and an international research fellowship in pediatric pain management. The candidate will be mentored by experts in sickle cell disease, pediatric pain, health disparities, psychometrics and career development. The candidate's research project will focus on the hypothesis that the assessment of functional status better reflects response to pain therapies in children with sickle cell disease than currently available measures.
The first aim of the project is the development of the Functional Assessment and Recovery Scale (PARS) as a daily measure of function in children hospitalized with sickle cell pain. Indeed, at the current time there is no specific instrument that is aimed to assess pain and functionality in hospitalized children with sickle cell disease. To establish domains and items for the PARS, the candidate has assembled a panel of experts in this area, and will interview children hospitalized with vasoocclusive pain. In the second aim the candidate will demonstrate the reliability, validity and responsiveness of the PARS in children hospitalized with sickle cell pain. The candidate anticipates that the completion of the proposed research project will result in a substantial improvement in the assessment of pain in children with sickle cell disease. Relevance: Children with sickle cell disease suffer from episodes of severe unrelenting pain. This project will develop a functional assessment tool for the measurement of pain in sickle cell disease. We hope this will result in a marked improvement in the care of these children.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Mentored Patient-Oriented Research Career Development Award (K23)
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Special Emphasis Panel (ZHL1-CSR-R (O1))
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Werner, Ellen
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Connecticut Children's Medical Center
United States
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Zempsky, William T; Wakefield, Emily O; Santanelli, James P et al. (2017) Widespread Pain Among Youth With Sickle Cell Disease Hospitalized With Vasoocclusive Pain: A Different Clinical Phenotype? Clin J Pain 33:335-339
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