DOI: 10.6084/m9.figshare.25447570
title: Long-Term Cryptococcal Meningitis Survival, Uganda (DATA)

description: <b>Data: Meningitis Treatment Program at Lira Regional Referral Hospital (LRRH), Uganda</b><b>For Authors:</b> Dr.Mark Okwir, MBChB, MMed, [Affiliation: Department of Public Health Sciences, University of Rochester Medical Center, 265 Crittenden Boulevard CU420644, Rochester, NY, 14642, USA. / Lira University, Faculty of Medicine, Lira, Uganda]<b>Data Description:</b>This dataset is derived from a de-identified patient registry of the Meningitis Treatment Program implemented at Lira Regional Referral Hospital (LRRH) in rural northern Uganda. The dataset contains de-identified information (HIPPA privacy rule) collected from 2015 to 2021. It represents the implementation of the <b>Cryptococcal Meningitis Diagnosis and Treatment Program (CM-DTP)</b>, a standard of care approach. The CM-DTP was initiated in February 2017 and followed the World Health Organization (WHO) and Ugandan Clinical Guidelines for the management of Cryptococcal Meningitis (CM).Our overarching goal in sharing this data is to contribute to the advancement of knowledge and evidence-based practices in meningitis management. By making this dataset available in a public repository, we aim to facilitate transparency, reproducibility, and collaboration within the scientific community. We encourage fellow researchers, clinicians, and stakeholders to utilize this valuable resource to further explore meningitis diagnosis, treatment strategies, and patient outcomes, ultimately striving for improved healthcare delivery and patient care worldwide.<b>Data Content:</b>The dataset is provided in a Comma-Separated Values (.CSV) file. This file contains anonymized patient information collected during the CM-DTP program. A separate file, "Variable Keys", is provided in both Portable Document Format (PDF) and Microsoft Word Document (DOCX) formats. The "Variable Keys" document provides detailed definitions for each variable included in the dataset. The data encompasses the following key areas:· <b>Demographics:</b> Age, sex (No date of birth)· <b>Clinical Presentation with Impact on Long-term Survival of CM Patients:</b> Symptoms at presentation (e.g., altered mentation)· <b>Diagnostic Workup:</b> Selected laboratory findings including (CD4 counts and viral load), Cryptococcal antigen testing (CrAg)· <b>Imaging:</b> Head CT scan results (Not available)· <b>Treatment and adherence:</b> Adherence to medications administered.· <b>Outcomes (long-term):</b> Survival length, survival status (died or not).<b>Data Access:</b>The data will be made available for download from a public repository (to be specified upon data upload). Patient privacy is protected through de-identification. Users will be required to agree to a data use agreement before accessing the data (pre-specified by the publisher).<b>Data Use Considerations:</b>This anonymized data can be used for secondary research on Cryptococcal Meningitis and related topics. Additional information could be provided on request by the authors.<b>Authorization to use Data:</b>Paul R. Bohjanen, MD, Ph.D.: Department of Medicine, Division of Infectious Diseases, University of Rochester, New York, USA.E-mail: Paul_Bohjanen@urmc.rochester.edu<b>Citation:</b>If you use this data in your research, please cite and acknowledge the following:[Mark Okwir, MBChB, MMed1,2,3, Abigail Link, RN, MPH, PhD6, 7, Opio Bosco, BSE, MStat2, Fred Okello, EN3, Ritah Nakato, BBLT, MSc. Pharma2,3, Betty Nabongo, MBChB3, Jimmy Alal, MBChB3, Joshua Rhein, MD, PhD4,5, David Meya, MBChB, MMed, PhD4,5, Yu Liu, MPH, PhD1, Paul R. Bohjanen, MD, PhD1,2,4,5,7] "Meningitis Treatment Program Data from Lira Regional Referral Hospital, Uganda". [Name of public repository], [year]. [DOI of the data repository entry, if applicable]1Department of Public Health Sciences, University of Rochester Medical Center, 265 Crittenden Boulevard CU420644, Rochester, New York, 14642, USA2Department of Internal Medicine, Faculty of Medicine, Lira University, Lira, Uganda3Lira Regional Referral Hospital, Department of Medicine, Lira, Uganda4Infectious Diseases Institute, College of Health Sciences, Makerere University, Kampala, Uganda5Department of Medicine, Division of Infectious Diseases and International Medicine, University of Minnesota, Minneapolis, Minnesota, USA6University of Washington, School of Nursing, Seattle, Washington, USA7Department of Medicine, Division of Infectious Diseases, University of Rochester, New York, USA<br><b>Contact:</b>For any questions about the data, please contact Dr. Mark Okwir atDr. Mark Okwir, MBChB, MMed: Department of Public Health Sciences, University of Rochester Medical Center, 265 Crittenden Boulevard CU420644, Rochester, NY, 14642, USA.E-mail: mark_okwir@URMC.rochester.edu<br>