Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project

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We acknowledge the contributions of the National Organization for Rare Disorders (NORD) for their collaboration throughout the development and delivery of the training program; Dr. Divya Shridharmurthy for her project support. We thank the members of the project’s Patient Advisory Committee: Ron Bartek, Friedreich’s Ataxia Research Alliance; Marc Boutin, National Health Council; Christine Brown, National PKU Alliance; Laurie Burke, The Lora Group; Rachel Gomel, PSC Partners Seeking a Cure; Reta Honey Hiers, R.N.C., Tarlov Cyst Disease Foundation; Jack Kelly, Lymphangiomatosis & Gorham’s Disease Alliance; Jacqueline Kraska, formerly with NORD; C. Daniel Mullins, University of Maryland School of Pharmacy; and Christopher Scalchunes, Immune Deficiency Foundation.

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Correspondence to T. Rose Love.

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This project was funded by the Patient-Centered Outcomes Research Institute under contract 1036-UMD.

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All authors declare that they have no conflict of interest.

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Oehrlein, E.M., Love, T.R., Anyanwu, C. et al. Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project. Patient 12, 277–280 (2019).

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