Patient‐ and caregiver‐reported impact of symptoms in Duchenne muscular dystrophy von Rosero, Spencer, Weinstein, Jennifer, Seabury, Jamison, Varma, Anika, Dilek, Nuran, Zizzi, Christine, Coffey, Madeleine, Greco, Brittany, Heatwole, John, Alexandrou, Danae, Guntrum, Debra, Ciafaloni, Emma, Heatwole, Chad

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The Facioscapulohumeral Muscular Dystrophy‐Health Index: Development and evaluation of a disease‐specific outcome measure von Varma, Anika, Weinstein, Jennifer, Seabury, Jamison, Rosero, Spencer, Engebrecht, Charlotte, Wagner, Ellen, Zizzi, Christine, Luebbe, Elizabeth A., Dilek, Nuran, McDermott, Michael P., Kissel, John, Sansone, Valeria, Heatwole, Chad

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Patient-reported impact of symptoms in adrenoleukodystrophy (PRISM-ALD) von Varma, Anika, Weinstein, Jennifer, Seabury, Jamison, Rosero, Spencer, Dilek, Nuran, Heatwole, John, Engebrecht, Charlotte, Khosa, Shaweta, Chung, Kaitlin, Paker, Asif, Woo, Amy, Brooks, Gregory, Beals, Chan, Gandhi, Rohan, Heatwole, Chad

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The Myotonic Dystrophy Type 2 Health Index (MD2HI): A Multifactorial, Disease-specific, Patient-reported Outcome Measure for Use in Therapeutic Trials (P3-11.003) von Engebrecht, Charlotte, Rosero, Spencer, Weinstein, Jennifer, Seabury, Jamison, Varma, Anika, Khosa, Shaweta, Shupe, Christina, Irwin, Charlotte, Brocht, Alicia, Heatwole, Chad

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The fibromyalgia-health index - (FM-HI): Development and validation of a novel, patient reported, fibromyalgia outcome measure von Khosa, Shaweta, Weinstein, Jennifer, Seabury, Jamison, Rosero, Spencer, Varma, Anika, Dilek, Nuran, Engebrecht, Charlotte, Heatwole, John, Kaat, Aaron, Heatwole, Chad

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Initial Development of the Myasthenia Gravis-Health Index (MG-HI): Measuring the Most Prevalent and Impactful Symptoms Identified in Myasthenia Gravis (P10-11.013) von Engebrecht, Charlotte, Rosero, Spencer, Khosa, Shaweta, Weinstein, Jennifer, Seabury, Jamison, Varma, Anika, Shupe, Christina, Irwin, Charlotte, Brocht, Alicia, Carbunar, Olimpia, Benatar, Michael, Heatwole, Chad

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Development and validation of a caregiver‐reported outcome measure for Alzheimer’s disease: the Alzheimer’s Disease Caregiver Reported‐Health Index (ADCR‐HI), a fully validated too... von Rosero, Spencer, Varma, Anika, Seabury, Jamison, Weinstein, Jennifer, Engebrecht, Charlotte, Dilek, Nuran, Arky, Abigail, Santos, Elizabeth, Heatwole, Chad

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Development of a patient‐reported outcome measure for Alzheimer’s disease: the Alzheimer’s Disease‐Health Index (AD‐HI), a fully validated tool to bolster clinical trial and resear... von Rosero, Spencer, Varma, Anika, Seabury, Jamison, Weinstein, Jennifer, Engebrecht, Charlotte, Dilek, Nuran, Arky, Abigail, Santos, Elizabeth, Heatwole, Chad

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The inclusion body myositis-health index (IBM-HI): Development and validation of a novel, disease-specific, patient-reported outcome measure von Rosero, Spencer, Seabury, Jamison, Bhagchandani, Perya, Weinstein, Jennifer, Varma, Anika, Zizzi, Christine, Heatwole, John, Khosa, Shaweta, Engebrecht, Charlotte, Johnson, Nicholas, Gibson, Cynthia, Dilek, Nuran, Marten, Bill, Heatwole, Chad

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Development, validation, and translation of patient- and caregiver- reported outcome measures for Duchenne Muscular Dystrophy (DMD): DMD-HI and DMDCR-HI von Khosa, Shaweta, Varma, Anika, Weinstein, Jennifer, Rosero, Spencer, Seabury, Jamison, Dilek, Nuran, Zizzi, Christine, Engebrecht, Charlotte, Heatwole, John, Cohen, Brittany, Alexandrou, Danae, Guntrum, Debra, Ciafaloni, Emma, Heatwole, Chad

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Results from a 12-month Natural History Study of Patients with Cerebral Cavernous Malformations (S41.006) von Heatwole, Chad, Seabury, Jamison, Varma, Anika, Rosero, Spencer, Engebrecht, Charlotte, Khosa, Shaweta, Shupe, Christina, Irwin, Charlotte, Heatwole, John, Zizzi, Christine, Alexandrou, Danae, Dilek, Nuran, Watson, Roshawn, Blei, Holly, Lee, Cornelia, Weinstein, Jennifer

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Development and Validation of Two Patient-reported Outcome Measures: The Adrenoleukodystrophy-Health Index (ALD-HI) and Adrenomyeloneuropathy-Health Index (AMN-HI) (P11-4.001) von Varma, Anika, Khosa, Shaweta, Weinstein, Jennifer, Seabury, Jamison, Rosero, Spencer, Engebrecht, Charlotte, Dilek, Nuran, Heatwole, John, Irwin, Charlotte, Shupe, Christina, Chung, Kaitlin, Sawyer, Eileen, Paker, Asif M., Brooks, Gregory, Beals, Chan, Gandhi, Rohan, Heatwole, Chad

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Longitudinal Evaluation of the Parkinson’s Disease-health Index: A Novel, Disease-specific Patient-reported Outcome Measure (P11-3.017) von Seabury, Jamison, Engebrecht, Charlotte, Weinstein, Jennifer, Varma, Anika, Rosero, Spencer, Khosa, Shaweta, Shupe, Christina, Irwin, Charlotte, Heatwole, John, Arky, Abigail, Zizzi, Christine, Dilek, Nuran, Purks, Jennifer, Adams, Jamie, Dorsey, E. Ray, Heatwole, Chad

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The Alzheimer’s Disease‐Health Indices (AD‐HI): Development of Two Novel Outcome Measures for Use in Clinical Trials von Seabury, Jamison, Arky, Abigail, Ayles, Megan, Dilek, Nuran, Hance, Margaret, Rosero, Spencer, Santos, Elizabeth, Weinstein, Jennifer, Varma, Anika, Heatwole, Chad

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DEVELOPMENT AND VALIDATION OF THE CROHN'S DISEASE-HEALTH INDEX (CD-HI), A CLINICALLY-RELEVANT, DISEASE-SPECIFIC PATIENT-REPORTED OUTCOME MEASURE von Seabury, Jamison, Weinstein, Jennifer, Rosero, Spencer, Varma, Anika, Wagner, Ellen, Zizzi, Christine, Dilek, Nuran, McDermott, Michael, Kaat, Aaron, Saubermann, Lawrence, Temple, Larissa, Rogoff, Scott, Heatwole, Chad, Rose, Zach

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DEVELOPMENT AND VALIDATION OF A PATIENT-REPORTED OUTCOME MEASURE FOR CROHN’S DISEASE: THE CROHN’S DISEASE-HEALTH INDEX (CD-HI), A FULLY VALIDATED TOOL TO BOLSTER CLINICAL TRIAL AND... von Rosero, Spencer, Varma, Anika, Seabury, Jamison, Weinstein, Jennifer, Wagner, Ellen, Zizzi, Christine, Engebrecht, Charlotte, Kaat, Aaron, Luebbe, Elizabeth, Dilek, Nuran, Heatwole, John, Saubermann, Lawrence, Temple, Larissa, Rogoff, Scott, Heatwole, Chad

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Patient-Reported Impact of Symptoms in Friedreich Ataxia von Seabury, Jamison, Alexandrou, Danae, Dilek, Nuran, Cohen, Brittany, Heatwole, John, Larkindale, Jane, Lynch, David R, Park, Courtney, Rosero, Spencer, Subramony, Sub H, Varma, Anika, Wagner, Ellen, Walther, Susan, Weinstein, Jennifer, Wells, McKenzie, Zizzi, Christine, Heatwole, Chad

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DEVELOPMENT AND VALIDATION OF THE CROHN’S DISEASE-HEALTH INDEX (CD-HI), A CLINICALLY-RELEVANT, DISEASE-SPECIFIC PATIENT-REPORTED OUTCOME MEASURE von Seabury, Jamison, Weinstein, Jennifer, Rosero, Spencer, Varma, Anika, Wagner, Ellen, Zizzi, Christine, Dilek, Nuran, McDermott, Michael, Kaat, Aaron, Saubermann, Lawrence, Temple, Larissa, Rogoff, Scott, Heatwole, Chad, Rose, Zach

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RESULTS FROM A NATIONAL CROSS-SECTIONAL STUDY OF DISEASE BURDEN IN CROHN’S DISEASE von Seabury, Jamison, Zizzi, Christine, Weinstein, Jennifer, Wagner, Ellen, Rosero, Spencer, Dilek, Nuran, Kaat, Aaron, McDermott, Michael, Saubermann, Lawrence, Temple, Larissa, Rogoff, Scott, Heatwole, Chad

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DEVELOPMENT AND VALIDATION OF A PATIENT-REPORTED OUTCOME MEASURE FOR CROHN’S DISEASE: THE CROHN’S DISEASE-HEALTH INDEX (CD-HI), A FULLY VALIDATED TOOL TO BOLSTER CLINICAL TRIAL AND... von Rosero, Spencer, Varma, Anika, Seabury, Jamison, Weinstein, Jennifer, Wagner, Ellen, Zizzi, Christine, Engebrecht, Charlotte, Kaat, Aaron, Luebbe, Elizabeth, Dilek, Nuran, Heatwole, John, Saubermann, Lawrence, Temple, Larissa, Rogoff, Scott, Heatwole, Chad

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