Clinical trial · Observational
Medication Adherence and Non-adherence in Adults With Rare Disease
A Longitudinal, Digital Study Using the Medication Adherence Reasons Scale (MAR-Scale) to Identify the Reasons for Non-adherence to Medications in Rare Disease
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Why stopped (as posted): Liquidation of sponsor
Summary
Brief summary (as posted)
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.
Conditions
Conditions (6)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Cystic Fibrosis | — | UNRESOLVED | — |
| Hemophilia A | — | UNRESOLVED | — |
| Hemophilia B | — | UNRESOLVED | — |
| Idiopathic Pulmonary Fibrosis | — | UNRESOLVED | — |
| Myasthenia Gravis | — | UNRESOLVED | — |
| Sickle Cell Disease | — | UNRESOLVED | — |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| MAR-Scale | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (5)
- label
- Cystic fibrosis
- description
- Patients aged 18+ and diagnosed with cystic fibrosis. Patients will answer the MAR-Scale once every three months for a year.
- interventionNames
- Other: MAR-Scale
- label
- 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.
- interventionNames
- Other: MAR-Scale
- label
- 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.
- interventionNames
- Other: MAR-Scale
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
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.
References
Publications (0)
Data not yet available