Ignite Creation Date:
2024-05-06 @ 3:03 PM
Last Modification Date:
2025-12-16 @ 6:52 PM
Study NCT ID:
NCT04505969
Status:
None
Last Update Posted:
2024-05-10 00:00:00
First Post:
2020-08-06 00:00:00
Brief Title:
A Study Aimed to Assess the Needs of Subjects With Sickle Cell Disease and Healthcare Professionals Managing Sickle Cell Disease Patients in Selected Nigerian Centres
Sponsor:
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Organization:
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Study Overview
Official Title:
Pilot Study to Assess Patients' and Health Workers' Needs Involved in Sickle Cell Disease Management
Status:
None
Status Verified Date:
2023-11
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
The primary objective of this study is to understand the needs of SCD patients and health workers involved in SCD management, with particular reference to the disease management in the clinical centre. This is a descriptive, mixed method prospective questionnaire-based study.
The study is intended as a pilot experience to verify the feasibility of the action through a structured survey.
Two questionnaires have been developed: one will be administered to 30 SCD patients or parents/legally designated representatives of children affected by SCD and 30 Professionals working with SCD patients (mainly doctors and nurses) in four clinical centres in Nigeria for a total of 120 patients and 120 health workers. A focus group discussion will be run with the SCD patients/parents. Following the pilot study, a wider survey will be launched involve patients, parents and healthcare professionals in the whole country and in other centres involved in the project.
Data for this study will be collected using triangulation methods. A simple random and purposive sampling techniques will be used to select respondents for the study. The collected data for this study will be presented and analysed using SPSS and thematic analysis. The study will be conducted in four centres in Nigeria: Barau Dikko Teaching Hospital Kaduna State University (BDTH), Ahmadu Bello University Teaching Hospital Zaria (ABUTH), National Hospital Abuja (NHA), and Federal Medical Centre Katsina (FMC). The study will be performed in the framework of the "African Research and Innovative initiative for Sickle cell Education: Improving Research Capacity for Service Improvement" project (GA 824021 - ARISE - H2020-MSCA-RISE-2018).
ARISE is the EU (Horizon 2020) 4-year funded project between European, African, US and Lebanon institutions for research staff exchanges, started on 1st of January 2019. Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus coordinates the ARISE project.
The study is intended as a pilot experience to verify the feasibility of the action through a structured survey.
Two questionnaires have been developed: one will be administered to 30 SCD patients or parents/legally designated representatives of children affected by SCD and 30 Professionals working with SCD patients (mainly doctors and nurses) in four clinical centres in Nigeria for a total of 120 patients and 120 health workers. A focus group discussion will be run with the SCD patients/parents. Following the pilot study, a wider survey will be launched involve patients, parents and healthcare professionals in the whole country and in other centres involved in the project.
Data for this study will be collected using triangulation methods. A simple random and purposive sampling techniques will be used to select respondents for the study. The collected data for this study will be presented and analysed using SPSS and thematic analysis. The study will be conducted in four centres in Nigeria: Barau Dikko Teaching Hospital Kaduna State University (BDTH), Ahmadu Bello University Teaching Hospital Zaria (ABUTH), National Hospital Abuja (NHA), and Federal Medical Centre Katsina (FMC). The study will be performed in the framework of the "African Research and Innovative initiative for Sickle cell Education: Improving Research Capacity for Service Improvement" project (GA 824021 - ARISE - H2020-MSCA-RISE-2018).
ARISE is the EU (Horizon 2020) 4-year funded project between European, African, US and Lebanon institutions for research staff exchanges, started on 1st of January 2019. Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus coordinates the ARISE project.
Detailed Description:
The primary objective of this study is to understand the needs of SCD patients and health workers involved in SCD management with particular reference to the disease management in the clinical centre This is a descriptive mixed method prospective questionnaire-based study
The study is intended as a pilot experience to verify the feasibility of the action through a structured survey
Two questionnaires have been developed one will be administered to 30 SCD patients or parentslegally designated representatives of children affected by SCD and 30 Professionals working with SCD patients mainly doctors and nurses in four clinical centres in Nigeria for a total of 120 patients and 120 health workers A focus group discussion will be run with the SCD patientsparents Following the pilot study a wider survey will be launched involve patients parents and healthcare professionals in the whole country and in other centres involved in the project
Data for this study will be collected using triangulation methods A simple random and purposive sampling techniques will be used to select respondents for the study The collected data for this study will be presented and analysed using SPSS and thematic analysis The study will be conducted in four centres in Nigeria Barau Dikko Teaching Hospital Kaduna State University BDTH Ahmadu Bello University Teaching Hospital Zaria ABUTH National Hospital Abuja NHA and Federal Medical Centre Katsina FMC The study will be performed in the framework of the African Research and Innovative initiative for Sickle cell Education Improving Research Capacity for Service Improvement project GA 824021 - ARISE - H2020-MSCA-RISE-2018
ARISE is the EU Horizon 2020 4-year funded project between European African US and Lebanon institutions for research staff exchanges started on 1st of January 2019 Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus coordinates the ARISE project
The study is intended as a pilot experience to verify the feasibility of the action through a structured survey
Two questionnaires have been developed one will be administered to 30 SCD patients or parentslegally designated representatives of children affected by SCD and 30 Professionals working with SCD patients mainly doctors and nurses in four clinical centres in Nigeria for a total of 120 patients and 120 health workers A focus group discussion will be run with the SCD patientsparents Following the pilot study a wider survey will be launched involve patients parents and healthcare professionals in the whole country and in other centres involved in the project
Data for this study will be collected using triangulation methods A simple random and purposive sampling techniques will be used to select respondents for the study The collected data for this study will be presented and analysed using SPSS and thematic analysis The study will be conducted in four centres in Nigeria Barau Dikko Teaching Hospital Kaduna State University BDTH Ahmadu Bello University Teaching Hospital Zaria ABUTH National Hospital Abuja NHA and Federal Medical Centre Katsina FMC The study will be performed in the framework of the African Research and Innovative initiative for Sickle cell Education Improving Research Capacity for Service Improvement project GA 824021 - ARISE - H2020-MSCA-RISE-2018
ARISE is the EU Horizon 2020 4-year funded project between European African US and Lebanon institutions for research staff exchanges started on 1st of January 2019 Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus coordinates the ARISE project
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None