| Pete Chan, BSc | |
| +44 (0) 20 3920 9880 | |
| [email protected] |
> 18 Years
Observational
All
Other
Unknown
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.
– 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
– There are no exclusion criteria. Any member of a Raremark community will be able to
take part in this study if they meet the