Advancing the Patient Experience in COPD

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The Registry

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Capturing data from 3,000 COPD patients. 
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Bringing together electronic medical records with patient reported information & observations from postally administered questionnaires.

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Guided by a network of COPD physicians. 

Data Collection

APEX COPD will bring together electronic medical records with patient reported information and observations, and present this to clinicians in a structured and clinically relevant format at the point of care. This will be achieved using electronic patient surveys and standardized data collection, guided by a network of COPD physicians in primary and secondary care.
  • Patient demographics
  • Medical history and symptoms (COPD relevant) including prior exacerbations, exposure, and comorbidities.
  • COPD treatment and management including medications and side effects (such as those related to steroid exposure and/or biologics), adherence data, vaccinations, referrals, surgery, rehabilitation and other non-pharmacological strategies.
  • Patient-reported information and outcomes including health status scores (CAT, mMRC), and device satisfaction.
  • Patient-reported information and outcomes including health status scores (CAT, mMRC), and device satisfaction.

Variable inclusion in the registry was defined by a panel of US and international COPD experts using a modified Delphi method. This method is a process of anonymous voting which assumes that a group decision is more valid than a decision made by an individual. It comprises of three rounds to gather anonymized opinions on the core variables. The advantage of this process is the anonymity of participants which ensures that all opinions are considered equally, enabling views to be changed without inhibition by participants.

Patient Population

APEX COPD will collect EHR and Patient Reported Information & Outcomes data from 3,000+ COPD patients across the USA over a 4-year period (2019-2022).

All Patients
Exclude: NO COPD diagnosis, monitoring or review code
Exclude: Age < 35 years at COPD diagnosis.
Exclude: Currently participating in other clinical trials.
Exclude: Life expetancy < 12 months from date of enrolment, positive for cancer diagnosis, or in palliative care

Eligible Patients