A Longitudinal, Digital Study Using the Medication Adherence Reasons Scale (MAR-Scale) to Identify the Reasons for Non-adherence to Medications in Rare Disease
试验速览
- 阶段
- 不适用
- 状态
- 撤回
- 发起方
- 主要终点
- To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
研究概览
简要总结
The purpose of this study is to use the Medication Adherence Reasons Scale (MAR-Scale) to determine the extent of non-adherence to specific medications indicated to treat cystic fibrosis, hemophilia (A or B), idiopathic pulmonary fibrosis, myasthenia gravis, and sickle cell disease, and to identify the top patient-reported reasons for non-adherence. Internal reliability of the MAR-Scale will also be assessed in each condition.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Have a confirmed (self-reported) diagnosis by a doctor or other licensed healthcare professional of one of the following conditions:
- •Cystic fibrosis
- •Hemophilia (A or B)
- •Idiopathic pulmonary fibrosis
- •Myasthenia gravis
- •Sickle cell disease
- •Have access to the internet
- •Are aged 18 years or above
- •Are comfortable reading and answering questions in English
- •Have an active prescription for at least one medication indicated to treat the relevant condition (self-reported)
- •NB: Individuals will be eligible even if the prescription has not been dispensed (filled) yet, and also if they have the medication(s), but are not actually taking it/them Are able and willing to provide consent electronically through the my.raremark.com platform
排除标准
- •There are no exclusion criteria. Any member of a Raremark community will be able to take part in this study if they meet the inclusion criteria and can provide their informed consent.
结局指标
主要结局
To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
时间窗: 1 year
Tally of reasons for non-adherence.
To use the MAR-Scale to determine the extent of non-adherence to specific medications indicated to treat a range of rare diseases.
时间窗: 1 year
Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.
次要结局
- To perform psychometric analysis of the MAR-Scale questionnaire based on data collected from rare disease patients.(Baseline)