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

C

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

Trial contacts and locations

0

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Data sourced from clinicaltrials.gov

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