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3. Patient-Reported Impact of Symptoms in Friedreich Ataxia

Author

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, and Heatwole, Chad

Published
2022
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4. Friedreich Ataxia Caregiver-Reported Health Index

Author

Seabury, Jamison, primary, Varma, Anika, additional, Weinstein, Jennifer, additional, Rosero, Spencer J., additional, Engebrecht, Charlotte, additional, Khosa, Shaweta, additional, Zizzi, Christine, additional, Wagner, Ellen S., additional, Alexandrou, Danae, additional, Cohen, Brittany L., additional, Dilek, Nuran, additional, Heatwole, John M., additional, Lynch, David R., additional, Park, Courtney C., additional, Wells, McKenzie, additional, Subramony, S.H., additional, and Heatwole, Chad R., additional

Published
2024
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5. Patient‐ and caregiver‐reported impact of symptoms in Duchenne muscular dystrophy

Author

Rosero, Spencer, primary, Weinstein, Jennifer, additional, Seabury, Jamison, additional, Varma, Anika, additional, Dilek, Nuran, additional, Zizzi, Christine, additional, Coffey, Madeleine, additional, Greco, Brittany, additional, Heatwole, John, additional, Alexandrou, Danae, additional, Guntrum, Debra, additional, Ciafaloni, Emma, additional, and Heatwole, Chad, additional

Published
2024
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6. Results from a 12-month Natural History Study of Patients with Cerebral Cavernous Malformations (S41.006)

Author

Heatwole, Chad, primary, Seabury, Jamison, additional, Varma, Anika, additional, Rosero, Spencer, additional, Engebrecht, Charlotte, additional, Khosa, Shaweta, additional, Shupe, Christina, additional, Irwin, Charlotte, additional, Heatwole, John, additional, Zizzi, Christine, additional, Alexandrou, Danae, additional, Dilek, Nuran, additional, Watson, Roshawn, additional, Blei, Holly, additional, Lee, Cornelia, additional, and Weinstein, Jennifer, additional

Published
2024
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7. Development and Validation of Two Patient-reported Outcome Measures: The Adrenoleukodystrophy-Health Index (ALD-HI) and Adrenomyeloneuropathy-Health Index (AMN-HI) (P11-4.001)

Author

Varma, Anika, primary, Khosa, Shaweta, additional, Weinstein, Jennifer, additional, Seabury, Jamison, additional, Rosero, Spencer, additional, Engebrecht, Charlotte, additional, Dilek, Nuran, additional, Heatwole, John, additional, Irwin, Charlotte, additional, Shupe, Christina, additional, Chung, Kaitlin, additional, Sawyer, Eileen, additional, Paker, Asif M., additional, Brooks, Gregory, additional, Beals, Chan, additional, Gandhi, Rohan, additional, and Heatwole, Chad, additional

Published
2024
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8. Longitudinal Evaluation of the Parkinson’s Disease-health Index: A Novel, Disease-specific Patient-reported Outcome Measure (P11-3.017)

Author

Seabury, Jamison, primary, Engebrecht, Charlotte, additional, Weinstein, Jennifer, additional, Varma, Anika, additional, Rosero, Spencer, additional, Khosa, Shaweta, additional, Shupe, Christina, additional, Irwin, Charlotte, additional, Heatwole, John, additional, Arky, Abigail, additional, Zizzi, Christine, additional, Dilek, Nuran, additional, Purks, Jennifer, additional, Adams, Jamie, additional, Dorsey, E. Ray, additional, and Heatwole, Chad, additional

Published
2024
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9. Patient-Reported Impact of Symptoms in Fibromyalgia (PRISM-FM)

Author

Weinstein, Jennifer, primary, Rosero, Spencer, additional, Seabury, Jamison, additional, Varma, Anika, additional, Engebrecht, Charlotte, additional, Khosa, Shaweta, additional, Heatwole, John, additional, Dilek, Nuran, additional, Kaat, Aaron, additional, and Heatwole, Chad, additional

Published
2024
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10. Development, validation, and translation of patient- and caregiver- reported outcome measures for Duchenne Muscular Dystrophy (DMD): DMD-HI and DMDCR-HI

Author

Khosa, Shaweta, primary, Varma, Anika, additional, Weinstein, Jennifer, additional, Rosero, Spencer, additional, Seabury, Jamison, additional, Dilek, Nuran, additional, Zizzi, Christine, additional, Engebrecht, Charlotte, additional, Heatwole, John, additional, Cohen, Brittany, additional, Alexandrou, Danae, additional, Guntrum, Debra, additional, Ciafaloni, Emma, additional, and Heatwole, Chad, additional

Published
2023
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12. The inclusion body myositis-health index (IBM-HI): Development and validation of a novel, disease-specific, patient-reported outcome measure

Author

Rosero, Spencer, primary, Seabury, Jamison, additional, Bhagchandani, Perya, additional, Weinstein, Jennifer, additional, Varma, Anika, additional, Zizzi, Christine, additional, Heatwole, John, additional, Khosa, Shaweta, additional, Engebrecht, Charlotte, additional, Johnson, Nicholas, additional, Gibson, Cynthia, additional, Dilek, Nuran, additional, Marten, Bill, additional, and Heatwole, Chad, additional

Published
2023
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13. The amyotrophic lateral sclerosis-health index (ALS-HI): development and evaluation of a novel outcome measure

Author

Varma, Anika, Weinstein, Jennifer, Seabury, Jamison, Rosero, Spencer, Zizzi, Christine, Alexandrou, Danae, Wagner, Ellen, Dilek, Nuran, Heatwole, John, Wuu, Joanne, Caress, James, Bedlack, Richard, Granit, Volkan, Statland, Jeffrey, Mehta, Paul, Benatar, Michael, Kaat, Aaron, and Heatwole, Chad

Subjects
Neurology, Neurology (clinical)
Abstract

Objective: The identification of effective therapeutics for ALS necessitates valid and responsive outcome measures to track disease progression and therapeutic gain in clinical trial settings. The Amyotrophic Lateral Sclerosis-Health Index (ALS-HI) is a multifaceted, disease-specific patient-reported outcome measure (PRO) designed to measure ALS symptomatic disease burden in adults with ALS. Methods: Through a national cross-sectional study of individuals with ALS, we identified the most important symptoms in ALS. These symptoms were incorporated into the ALS-HI, a measure that quantifies the multifaceted disease burden in ALS. We performed factor analysis, qualitative patient interviews, test-retest reliability assessment, and known groups analysis to evaluate and validate the ALS-HI. Results: The cross-sectional study included 497 participants with ALS who identified the most important symptoms to include in the ALS-HI. Fifteen participants beta tested the ALS-HI and found it to be clear, easy to use, and relevant. Twenty-one participants engaged in a test-retest reliability study, which indicated the reliability of the instrument (intraclass correlation coefficient = 0.952 for full instrument). The final ALS-HI and its subscales demonstrated a high internal consistency (Cronbach’s α = 0.981 for full instrument) and an ability to differentiate between groups with dissimilar disease severity. Conclusions: This research supports use of the ALS-HI as a valid, sensitive, reliable, and relevant PRO to assess the multifactorial disease burden faced by adults with ALS. The ALS-HI has potential as a mechanism to track disease progression and treatment efficacy during therapeutic trials.

Published
2023
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14. Patient-reported impact of symptoms in lung cancer (PRISM-LC)

Author

Varma, Anika, primary, Weinstein, Jennifer, additional, Seabury, Jamison, additional, Rosero, Spencer, additional, Zizzi, Christine, additional, Dilek, Nuran, additional, Heatwole, John, additional, Baumgart, Megan, additional, Mulford, Deborah, additional, Maggiore, Ronald, additional, Conrow, Lainie, additional, King, Jennifer C., additional, Wiens, Jacinta, additional, and Heatwole, Chad, additional

Published
2023
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15. Patient-Reported Impact of Symptoms in Adrenoleukodystrophy (PRISM-ALD)

Author

Varma, Anika, primary, Weinstein, Jennifer, additional, Seabury, Jamison, additional, Rosero, Spencer, additional, Dilek, Nuran, additional, Heatwole, John, additional, Engebrecht, Charlotte, additional, Khosa, Shaweta, additional, Chung, Kaitlin, additional, Paker, Asif, additional, Woo, Amy, additional, Brooks, Gregory, additional, Beals, Chan, additional, Gandhi, Rohan, additional, and Heatwole, Chad, additional

Published
2023
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16. Abstract 4383: Development and validation of the Lung Cancer-Health Index (LC-HI), a clinically-relevant, disease-specific patient-reported outcome measure

Author

Varma, Anika, primary, Rosero, Spencer, additional, Seabury, Jamison, additional, Weinstein, Jennifer, additional, Engebrecht, Charlotte, additional, Zizzi, Christine, additional, Dilek, Nuran, additional, Heatwole, John, additional, Baumgart, Megan, additional, Mulford, Deborah, additional, Maggiore, Ronald, additional, Conrow, Lainie, additional, King, Jennifer, additional, Wiens, Jacinta, additional, and Heatwole, Chad, additional

Published
2023
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18. 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 RESEARCH INFRASTRUCTURE

Author

Rosero, Spencer, primary, Varma, Anika, additional, Seabury, Jamison, additional, Weinstein, Jennifer, additional, Wagner, Ellen, additional, Zizzi, Christine, additional, Engebrecht, Charlotte, additional, Kaat, Aaron, additional, Luebbe, Elizabeth, additional, Dilek, Nuran, additional, Heatwole, John, additional, Saubermann, Lawrence, additional, Temple, Larissa, additional, Rogoff, Scott, additional, and Heatwole, Chad, additional

Published
2023
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19. Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): a national, cross-sectional study

Author

Zizzi, Christine, primary, Seabury, Jamison, additional, Rosero, Spencer, additional, Alexandrou, Danae, additional, Wagner, Ellen, additional, Weinstein, Jennifer S., additional, Varma, Anika, additional, Dilek, Nuran, additional, Heatwole, John, additional, Wuu, Joanne, additional, Caress, James, additional, Bedlack, Richard, additional, Granit, Volkan, additional, Statland, Jeffrey M., additional, Mehta, Paul, additional, Benatar, Michael, additional, and Heatwole, Chad, additional

Published
2023
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21. Patient-Reported Impact of Symptoms in Crohn's Disease

Author

Varma, Anika, primary, Weinstein, Jennifer, additional, Seabury, Jamison, additional, Rosero, Spencer, additional, Wagner, Ellen, additional, Zizzi, Christine, additional, Luebbe, Elizabeth, additional, Dilek, Nuran, additional, McDermott, Michael, additional, Heatwole, John, additional, Saubermann, Lawrence, additional, Temple, Larissa, additional, Rogoff, Scott, additional, and Heatwole, Chad, additional

Published
2022
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22. sj-docx-2-jcn-10.1177_08830738221135918 - Supplemental material for Disease Burden in Children With Spinal Muscular Atrophy: Results From a Large Cross-Sectional Study

Author

Rosero, Spencer, Weinstein, Jennifer, Seabury, Jamison, Zizzi, Christine, Wagner, Ellen, Varma, Anika, Heatwole, John, Alexandrou, Danae, MS, Nuran Dilek, Johnson, Brent A., and Heatwole, Chad

Subjects
FOS: Clinical medicine, 111403 Paediatrics, 110904 Neurology and Neuromuscular Diseases, Neuroscience
Abstract

Supplemental material, sj-docx-2-jcn-10.1177_08830738221135918 for Disease Burden in Children With Spinal Muscular Atrophy: Results From a Large Cross-Sectional Study by Spencer Rosero, Jennifer Weinstein, Jamison Seabury, Christine Zizzi, Ellen Wagner, Anika Varma, John Heatwole, Danae Alexandrou, Nuran Dilek MS and Brent A. Johnson, Chad Heatwole in Journal of Child Neurology

Published
2022
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23. sj-pdf-1-jcn-10.1177_08830738221135918 - Supplemental material for Disease Burden in Children With Spinal Muscular Atrophy: Results From a Large Cross-Sectional Study

Author

Rosero, Spencer, Weinstein, Jennifer, Seabury, Jamison, Zizzi, Christine, Wagner, Ellen, Varma, Anika, Heatwole, John, Alexandrou, Danae, MS, Nuran Dilek, Johnson, Brent A., and Heatwole, Chad

Subjects
FOS: Clinical medicine, 111403 Paediatrics, 110904 Neurology and Neuromuscular Diseases, Neuroscience
Abstract

Supplemental material, sj-pdf-1-jcn-10.1177_08830738221135918 for Disease Burden in Children With Spinal Muscular Atrophy: Results From a Large Cross-Sectional Study by Spencer Rosero, Jennifer Weinstein, Jamison Seabury, Christine Zizzi, Ellen Wagner, Anika Varma, John Heatwole, Danae Alexandrou, Nuran Dilek MS and Brent A. Johnson, Chad Heatwole in Journal of Child Neurology

Published
2022
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24. Patient-Reported Impact of Symptoms in Lung Cancer (PRISM-LC)

Author

Varma, Anika, primary, Weinstein, Jennifer, additional, Seabury, Jamison, additional, Rosero, Spencer, additional, Zizzi, Christine, additional, Dilek, Nuran, additional, Heatwole, John, additional, Baumgart, Megan, additional, Mulford, Deborah, additional, Maggiore, Ronald, additional, Conrow, Lainie, additional, King, Jennifer, additional, Wiens, Jacinta, additional, and Heatwole, Chad, additional

Published
2022
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25. Patient-Reported Impact of Symptoms in Friedreich Ataxia.

Author

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, McKenzie Wells, Zizzi, Christine, Heatwole, Chad, and Wells, McKenzie

Published
2023
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26. Disease Burden in Children With Spinal Muscular Atrophy: Results From a Large Cross-Sectional Study.

Author

Rosero, Spencer, Weinstein, Jennifer, Seabury, Jamison, Zizzi, Christine, Wagner, Ellen, Varma, Anika, Heatwole, John, Alexandrou, Danae, MS, Nuran Dilek, Johnson, Brent A., and Heatwole, Chad

Subjects
SPINAL muscular atrophy, JUVENILE diseases, CROSS-sectional method
Abstract

Background: To facilitate advances in spinal muscular atrophy therapeutic research, it is important to determine the impact and prevalence of symptoms experienced by children with spinal muscular atrophy. Methods: We conducted qualitative interviews with caregivers of children with spinal muscular atrophy. From these interviews, we generated a survey inquiring about 260 symptoms of importance grouped into 17 symptomatic themes. Results: Sixteen caregivers of children with spinal muscular atrophy aged from 4 months to 12 years participated in initial interviews, and 77 caregivers completed the survey. Higher symptom prevalence was associated with spinal muscular atrophy type, SMN2 copy number, and functional status. Hip, thigh, or knee weakness had the greatest reported impact on the lives of children with spinal muscular atrophy. Conclusions: This research provides one of the largest data sets regarding disease burden in children with spinal muscular atrophy. The most prevalent symptoms are not identical to those with the greatest impact. This unique insight into the most impactful symptoms will help focus therapeutic development in spinal muscular atrophy. [ABSTRACT FROM AUTHOR]

Published
2023
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27. Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): A national, cross-sectional study.

Author

Zizzi C, Seabury J, Rosero S, Alexandrou D, Wagner E, Weinstein JS, Varma A, Dilek N, Heatwole J, Wuu J, Caress J, Bedlack R, Granit V, Statland JM, Mehta P, Benatar M, and Heatwole C

Abstract

Background: As novel therapeutic interventions are being developed and tested in the amyotrophic lateral sclerosis (ALS) population, there is a need to better understand the symptoms and issues that have the greatest impact on the lives of individuals with ALS. We aimed to determine the frequency and relative importance of symptoms experienced by adults in a national ALS sample and to identify factors that are associated with the greatest disease burden in this population., Methods: We conducted 15 qualitative interviews of individuals with varied ALS phenotypes and analyzed 732 quotes regarding the symptomatic disease burden of ALS between August 2018 and March 2019. We subsequently conducted a national, cross-sectional study of 497 participants with ALS and ALS variants through the Centers for Disease Control and Prevention's (CDC) National ALS Registry between July 2019 and December 2019. Participants reported on the prevalence and relative importance of 189 symptomatic questions representing 17 symptomatic themes that were previously identified through qualitative interviews. Analysis was performed to determine how age, sex, education, employment, time since onset of symptoms, location of symptom onset, feeding tube status, breathing status and speech status relate to symptom and symptomatic theme prevalence., Findings: Symptomatic themes with the highest prevalence in our sample were an inability to do activities (93.8%), fatigue (92.6%), problems with hands or fingers (87.7%), limitations with mobility or walking (86.7%), and a decreased performance in social situations (85.7%). Participants identified inability to do activities and limitations with mobility or walking as having the greatest overall effect on their lives., Interpretation: Individuals with ALS experience a variety of symptoms that affect their lives. The prevalence and importance of these symptoms differ among the ALS population. The most prevalent and important symptoms offer potential targets for improvements in future therapeutic interventions., Funding: Research funding was provided by ALS Association., Competing Interests: CZ has previously provided consultation to Recursion Pharmaceuticals and reports no other disclosures. RB receives grants or contracts from the 10.13039/100000971ALS Association, Medicinova, Healey Center, and Orion with payments through 10.13039/100006510Duke University for various ALS projects and ALS trials. He receives book royalities through Demos Publishing. He provides consultation to ALS Association, Alexion, Amylyx, Apellis, Black Swan, Corcept, Cytokinetics, GenieUS, Guidepoint, ITF Pharma, New Biotic, Shinkei, and Woolsey Pharma. He has received payments for speaking on ALS from Amylyx. He has received payments for developing education materials on ALS from Projects in Knowledge and Medscape. He has participated on Data Safety Monitoring Boards for AB Science, Biogen, Brainstorm, Neurosense, and PTC. He has served on the scientific advisory board at GenieUS. VG is an employee of Biohaven Pharmaceuticals (his contribution to this work was done as part of his role at the University of Miami). He has received consultation/advisory board fees from Amylyx Pharmacuticals. JS has received grants or contracts from 10.13039/100000065NINDS (U01 ReSolve U01NS101944), NINDS (R21 CAPN3 R21TR003184), FSHD Canada (MOVE + FSHD), FSHD Society (MOVE FSHD), 10.13039/100004952MDA (MD CRNG), 10.13039/100012644Friends of FSH Research (MOVE FSHD). He has provided consultation and served on SAB with Avidity, Dyne, Fulcrum, Arrowhead, ML Bio, and Sarepta. He has provided consultation to MT Pharma, He has provided consultation and served on the advisory board for Amylyx. He has served on the steering committee at Roche. MB reports grants from 10.13039/100000971ALS Association (16-TACL-242 and 17-LGCA-331), 10.13039/100000002NIH (U54-NS092091, R01-NS105479 and U01- NS107027), and 10.13039/100005202Muscular Dystrophy Association (645863). He has received consulting fees from Alector, Biogen, Novartis, Sanofi, UCB, UniQure. The University of Miami has licensed intellectual property to Biogen to support design of the ATLAS study (UMIP142-A.) In addition, he has a provisional patent pending entitled ‘Determining Onset of Amyotrophic Lateral Sclerosis.’ He serves on the Board of Trustees for the ALS Association (unpaid). CH receives royalty payments through the University of Rochester for copyrighted patient reported outcome measures including one for ALS. He has provided consultation to Biogen Idec, Ionis Pharmaceuticals, aTyr Pharma, AMO Pharma, Acceleron Pharma, Cytokinetics, Expansion Therapeutics, Harmony Biosciences, Regeneron Pharmaceuticals, Astellas Pharmaceuticals, AveXis, Recursion Pharmaceuticals, IRIS Medicine, Inc., Takeda Pharmaceutical Company, Scholar Rock, Avidity Biosciences, Novartis Pharmaceuticals Corporation, SwanBio Therapeutics, Neurocrine Biosciences, and the Marigold Foundation. He is scheduled to have travel reimbursement to present at the upcoming Muscle Study Group Meeting. JS, SR, DA, EW, JSW, AV, ND, JH, JW, JC, and PM report no disclosures., (© 2022 The Authors.)

Published
2022
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