Outcomes in CF Patients Accessing Their Registry Health Records (CFView)

Cystic Fibrosis Registry of Ireland

Status: Completed

Conditions: Cystic Fibrosis

Treatments: Other: CF educational videos; Other: CFView

Study type: Interventional

Funder types: Other

Identifiers

NCT03434886

CFView

Details and patient eligibility

About

A multifactorial, parallel group, randomised control study in cystic fibrosis (CF) patients aged 13-30 years over an 18 month period. Patients will be offered read-only access to their CF registry electronic health record (CF View), or educational videos on CF (videos), or videos and CF View, or usual standard of care. The study aims are to examine the effect of patient access to C View on a range of clinical outcomes, health service usage, health literacy and patient reported outcomes.

Enrollment: 282 patients

Sex: All

Ages: 13 to 30 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• diagnosed with CF
• registered with their national CF patient registry
• FEV1pp ≥40
• aged 13-30 years

Exclusion criteria

• organ transplantation
• FEV1pp <40

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

---

282 participants in 4 patient groups

CF View

Experimental group

Treatment:

Other: CFView

CF Educational videos

Active Comparator group

Treatment:

Other: CF educational videos

CF View and videos

Active Comparator group

Treatment:

Other: CFView

Other: CF educational videos

Usual standard of care

No Intervention group