A prospective longitudinal observational study of routine clinical care.

​http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=14493

A 6,000 patient multi-centre study.

In Leicester, the EMMACE-4 study will use CiviCRM to track completion of data collection instruments.

All other study data will be recorded in tools and applications supplied by Leeds Teaching Hospital.

Contact for this study is Velina Jordan, PI for Leicester is Ian Hudson.

Civi object model:

New group for patients: EMMACE-4

New study: EMMACE-4

• Standard Timeline
  • Consent
  • Receive inpatient medication list (same day)
  • Receive inpatient EQ-5D (same day)
  • Receive inpatient IPQ (same day)
  • Data entry (inpatient questionnaires) === 'Input Study Data'
  • Patient discharged (needed so subsequent events can be timed from this event)
  • Send out 30-day questionnaires - DONE BY LEEDS
  • Receive 30-day medications list (overdue at 44 days)
  • Receive 30-day EQ-5D (overdue at 44 days)
  • Receive 30-day IPQ (Illness Perception Questionnaire) (overdue at 44 days)
  • Receive 30-day PROM (overdue at 44 days)
  • Receive 30-day SIMS (Satisfaction with Information about Medicines Scale (overdue at 44 days)
  • Send out 180-day questionnaires - DONE BY LEEDS
  • Receive 180-day medications list (overdue at 194 days)
  • Receive 180-day EQ-5D (overdue at 194 days)
  • Receive 180-day IPQ (Illness Perception Questionnaire) (overdue at 194 days)
  • Receive 180-day SIMS (Satisfaction with Information about Medicines Scale (overdue at 194 days)
  • Send out 365-day questionnaires - DONE BY LEEDS
  • Receive 365-day medications list ( overdue at 379 days)
  • Receive 365-day EQ-5D ( overdue at 379 days)
  • Receive 365-day IPQ (Illness Perception Questionnaire) ( overdue at 379 days)

Study documentation implies online data entry by patients, but for the foreseeable future this will not be happening.

Probably do need additional activity for "MINAP data submitted to LEEDS", at around 120 days post-discharge.

Each q'aire also has an activity of 'check completeness', and a further activity for 'copy sent to Leeds'.

Additional activities available for 'send out a copy' in cases where patient hasn't completed it.