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

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Acknowledgements

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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Authors and Affiliations

  1. Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, 220 Arch Street, Room 01-328, Baltimore, MD, 21201, USA

    Elisabeth M. Oehrlein, T. Rose Love, Maya L. Hanna & Eleanor M. Perfetto

  2. Patient-Centered Outcomes Research Institute, Washington, DC, USA

    Chinenye Anyanwu

  3. National Health Council, Washington, DC, USA

    Elisabeth M. Oehrlein & Eleanor M. Perfetto

  4. National Organization for Rare Disorders, Washington, DC, USA

    Jacqueline Kraska

Authors
  1. Elisabeth M. Oehrlein
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  2. T. Rose Love
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  3. Chinenye Anyanwu
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  4. Maya L. Hanna
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  5. Jacqueline Kraska
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  6. Eleanor M. Perfetto
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Corresponding author

Correspondence to T. Rose Love.

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Funding

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

Conflict of Interest

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). https://doi.org/10.1007/s40271-018-0341-5

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  • DOI: https://doi.org/10.1007/s40271-018-0341-5

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