READ ME File For 'Data in support of ‘Are people living with Huntington’s Disease experiencing person-centred integrated care?’ Dataset DOI: https://doi.org/10.5258/SOTON/D3114 Date that the file was created: September, 2024 ------------------- GENERAL INFORMATION ------------------- ReadMe Author: Bartolomeu Pires, Sandra, University of Southampton [ORCID ID 0000-0003-3711-9040] Date of data collection: 2023-02-28 - 2023-10-02 Information about geographic location of data collection: England, UK Related projects: Published paper "Are people living with Huntington’s Disease experiencing person-centred integrated care?" -------------------------- SHARING/ACCESS INFORMATION -------------------------- Licenses/restrictions placed on the data, or limitations of reuse: data is openly available and accessible for 10 years from publication date. Recommended citation for the data: Bartolomeu Pires, S; Kunkel, D; Goodwin, N; Dace, S; Culliford, D; Kipps, C; Portillo, MC (2024) Data in support of "Are people living with Huntington’s Disease experiencing person-centred integrated care?". University of Southampton PURE Dataset. doi.org/10.5258/SOTON/D3114 AUTHORS: Sandra Bartolomeu Pires, PhD researcher ORCID ID https://orcid.org/0000-0003-3711-9040 Dorit Kunkel, Senior Research Fellow Nicholas Goodwin, Professor and Director of Central Coast Research Institute for Integrated Care Sally Dace, Patient and Public Involvement Contributor Lead David Culliford, Principal Medical Statistician Christopher Kipps, Professor of Clinical Neurology and Dementia Mari Carmen Portillo, Professor of Long Term Conditions ORCID ID https://orcid.org/0000-0003-1583-6612 TITLE: "Are people living with Huntington’s Disease experiencing person-centred integrated care?" JOURNAL: Journal of Huntington's Disease REFERENCE: Bartolomeu Pires S, Kunkel D, Goodwin N, et al. Are people living with Huntington’s disease experiencing person-centered integrated care? Journal of Huntington’s Disease 2024; 18796397241288449. -------------------- DATA & FILE OVERVIEW -------------------- This dataset contains: One excel file with anonymised quantitative and qualitative data. The template survey containing the questions and survey structure is available as supplementary material in the published paper. Additional related data collected that was not included in the current data package: Incomplete surveys were deleted from the dataset and not used in the study analysis, as described in the published paper. -------------------------- METHODOLOGICAL INFORMATION -------------------------- Description of methods used for collection/generation of data: https://classic.clinicaltrials.gov/ct2/show/NCT05828992 -------------------------- DATA-SPECIFIC INFORMATION -------------------------- Number of cases/rows: 155 rows, 153 participants, columns with data from A to NP Missing data codes: direct and indirect identifiers such as named counties were anonymised