A Longitudinal, Digital Study Using the Medication Adherence Reasons Scale (MAR-Scale) to Identify the Reasons for Non-adherence to Medications in Rare Disease

Study point of contact

Pete Chan, BSc
+44 (0) 20 3920 9880
[email protected]


> 18 Years

Study type








About the study

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.

participation requirements

– 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

participation restrictions

– There are no exclusion criteria. Any member of a Raremark community will be able to
take part in this study if they meet the