An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis
An orphan drug is a medicine used to treat rare diseases. The disease has a very low population, with most of the diseases will impair the patients’ body functions and be life threatening. This study aimed to evaluate the rare disease policy and access to orphan drugs in Malaysia. Three phases have...
| المؤلف الرئيسي: | |
|---|---|
| التنسيق: | أطروحة |
| اللغة: | الإنجليزية |
| منشور في: |
2022
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| الموضوعات: | |
| الوصول للمادة أونلاين: | http://eprints.usm.my/59508/ |
| Abstract | Abstract here |
| _version_ | 1855630291893223424 |
|---|---|
| author | Supian, Azuwana |
| author_facet | Supian, Azuwana |
| author_sort | Supian, Azuwana |
| description | An orphan drug is a medicine used to treat rare diseases. The disease has a very low population, with most of the diseases will impair the patients’ body functions and be life threatening. This study aimed to evaluate the rare disease policy and access to orphan drugs in Malaysia. Three phases have been completed. Phase one consisted of literature reviews to examine the current status of rare disease management in Malaysia and five other focus countries (Philippines, Singapore, Indonesia, Vietnam, and Thailand). They were examined based on the World Health Organisation’s (WHO) framework for action in strengthening health systems. A cross-sectional survey from ten public hospitals was also included in this phase to estimate the number of cases and treatment coverage for rare diseases in Malaysia. The second phase was designed by conducting 43 qualitative interviews and a focus group discussion on describing the perceptions among health stakeholders towards rare disease management. |
| first_indexed | 2025-10-17T08:46:29Z |
| format | Thesis |
| id | usm-59508 |
| institution | Universiti Sains Malaysia |
| language | English |
| last_indexed | 2025-10-17T08:46:29Z |
| publishDate | 2022 |
| record_format | EPrints |
| record_pdf | Restricted |
| spelling | usm-595082023-10-19T02:10:57Z http://eprints.usm.my/59508/ An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis Supian, Azuwana RS1-441 Pharmacy and materia medica An orphan drug is a medicine used to treat rare diseases. The disease has a very low population, with most of the diseases will impair the patients’ body functions and be life threatening. This study aimed to evaluate the rare disease policy and access to orphan drugs in Malaysia. Three phases have been completed. Phase one consisted of literature reviews to examine the current status of rare disease management in Malaysia and five other focus countries (Philippines, Singapore, Indonesia, Vietnam, and Thailand). They were examined based on the World Health Organisation’s (WHO) framework for action in strengthening health systems. A cross-sectional survey from ten public hospitals was also included in this phase to estimate the number of cases and treatment coverage for rare diseases in Malaysia. The second phase was designed by conducting 43 qualitative interviews and a focus group discussion on describing the perceptions among health stakeholders towards rare disease management. 2022-01 Thesis NonPeerReviewed application/pdf en http://eprints.usm.my/59508/1/24%20Pages%20from%20AZUWANA%20BINTI%20SUPIAN.pdf Supian, Azuwana (2022) An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis. PhD thesis, Perpustakaan Hamzah Sendut. |
| spellingShingle | RS1-441 Pharmacy and materia medica Supian, Azuwana An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis |
| thesis_level | PhD |
| title | An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis |
| title_full | An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis |
| title_fullStr | An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis |
| title_full_unstemmed | An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis |
| title_short | An Insight Of The Policy And Access To Orphan Drugs For Treating Rare Disease In Malaysia: Quantitative And Qualitative Analysis |
| title_sort | insight of the policy and access to orphan drugs for treating rare disease in malaysia quantitative and qualitative analysis |
| topic | RS1-441 Pharmacy and materia medica |
| url | http://eprints.usm.my/59508/ |
| work_keys_str_mv | AT supianazuwana aninsightofthepolicyandaccesstoorphandrugsfortreatingrarediseaseinmalaysiaquantitativeandqualitativeanalysis AT supianazuwana insightofthepolicyandaccesstoorphandrugsfortreatingrarediseaseinmalaysiaquantitativeandqualitativeanalysis |