What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy von Downs, Jenny, Ludwig, Natasha N., Wojnaroski, Mary, Keeley, Jessica, Schust Myers, Leah, Chapman, Chere A. T., Hecker, JayEtta, Conecker, Gabrielle, Berg, Anne T.

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The GOAL‐Hēm journey: Shared decision making and patient‐centred outcomes von Roberts, Jonathan C., Richardson, Sharon, Miles, Moses E., Stanley, Justin, Chapman, Chere A. T., Denne, Michael, Caicedo, Jorge, Rockwood, Kenneth, Recht, Michael

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FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies von Berg, Anne T, Ludwig, Natasha N, Wojnaroski, Mary, Chapman, Chere A T, Hommer, Rebecca, Conecker, Gabrielle, Hecker, JayEtta Z, Downs, Jenny

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Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder von Ludwig, Natasha N., Wojnaroski, Mary, Suskauer, Stacy J., Slomine, Beth S., Kaiser, Ariela, Paltell, Katherine, Evans, Lindsey, Tucker, Karis, Chapman, Chere A.T., Conecker, Gabrielle, Hecker, JayEtta, Myers, Leah Schust, Downs, Jenny, Berg, Anne T.

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The Symptoms Targeted for Monitoring in a Web-Based Tracking Tool by Caregivers of People With Dementia and Agitation: Cross-Sectional Study von Rockwood, Kenneth, Sanon Aigbogun, Myrlene, Stanley, Justin, Wong, Helen, Dunn, Taylor, Chapman, Chère A T, Howlett, Susan E, Miguelez, Maia, McGarrigle, Lisa, Baker, Ross A

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A systematic review of goal attainment scaling implementation practices by caregivers in randomized controlled trials von Cheema, Kulpreet, Dunn, Taylor, Chapman, Chere, Rockwood, Kenneth, Howlett, Susan E., Sevinc, Gunes

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Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trials von Hecker, JayEtta, Conecker, Gabrielle, Chapman, Chere, Hommer, Rebecca, Ludwig, Natasha N, Sevinc, Gunes, Te, Sara, Wojnaroski, Mary, Downs, Jenny, Berg, Anne T

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Validity and reliability of the Medical Outcomes Study Short Form-20 questionnaire as a measure of quality of life in elderly people living at home von Carver, D J, Chapman, C A, Thomas, V S, Stadnyk, K J, Rockwood, K

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Electronic Goal Attainment von England, Amanda, Shehzad, Aaqib, Chapman, Chere, Rockwood, Kenneth

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Use of Basket Trials to Solve Sleep Problems in Patients with Rare Diseases von Pullen, Lara C, Bott, Nick, McCanless, Cate, Revana, Amee, Sevinc, Gunes, Gorman, Casey, Duncan, Alexandra, Poliquin, Sarah, Pfalzer, Anna C, Schmidt, Katie Q, Wassman, E Robert, Chapman, Chère, Picone, Maria

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