Medication Adherence and Non-adherence in Adults With Rare Disease

Xperiome

Status: Withdrawn

Conditions: Myasthenia Gravis; Hemophilia B; Cystic Fibrosis; Sickle Cell Disease; Hemophilia A; Idiopathic Pulmonary Fibrosis

Treatments: Other: MAR-Scale

Study type: Observational

Funder types: Other

Identifiers

NCT04541875

RM-RP005

Details and patient eligibility

About

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.

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• 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

Exclusion criteria

• 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.

Trial design

0 participants in 5 patient groups

Cystic fibrosis

Description:

Patients aged 18+ and diagnosed with cystic fibrosis. Patients will answer the MAR-Scale once every three months for a year.

Treatment:

Other: MAR-Scale

Hemophilia A or B

Description:

Patients aged 18+ and diagnosed with hemophilia A or B. Patients will answer the MAR-Scale once every three months for a year.

Treatment:

Other: MAR-Scale

Idiopathic pulmonary fibrosis

Description:

Patients aged 18+ and diagnosed with idiopathic pulmonary fibrosis. Patients will answer the MAR-Scale once every three months for a year.

Treatment:

Other: MAR-Scale

Myasthenia gravis

Description:

Patients aged 18+ and diagnosed with myasthenia gravis. Patients will answer the MAR-Scale once every three months for a year.

Treatment:

Other: MAR-Scale

Sickle cell disease

Description:

Patients aged 18+ and diagnosed with sickle cell disease. Patients will answer the MAR-Scale once every three months for a year.

Treatment:

Other: MAR-Scale