An ACCESS Cohort Study of patients with Interstitial Lung Disease


Patients engage in sub-studies
REC approved protocol

Accelerated evidence creation for Interstitial Lung Disease research.

AccessILD addresses specific evidence gaps within Interstitial Lung Disease research by allowing teams to build datasets that combine the power of electronic health records with clinical and patient generated data.

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Research that’s accessible to everyone

For Patients

  • Participation from home removes the physical, cost & time burden of travelling to a site

  • Offers research opportunities that may otherwise be inaccessible

  • Provided with insights and feedback on the impact of their participation

  • Patient Services team available to support their participation

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For Healthcare Providers

  • Support better access to research for your patients

  • No additional workload for your or your practice staff

  • uMed’s support team alleviates any pressure of calls to your practice regarding study participation

  • Generate ongoing revenue to support your practice

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For Life Science Researchers

  • Access well characterized consented patient cohorts

  • Reach untapped patient populations

  • Answer new research questions at speed, without setting up from scratch

  • Build credible clinical evidence from ethics committee/IRB approved protocol programmes

  • Access exclusive real-time integrated clinical and patient outcome data

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Build a complete picture from comprehensive, regulatory approved data

EMR data

Routinely collected from integration with our network of healthcare providers

Patient generated data

ePROS & home-testing

Clinical data

Objectively measurable parameters, clinician diagnoses, & objective movement data

Rapid data collection of real-world patient outcomes, comparative treatment effectiveness & digital endpoints

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Core Clinical Dataset

Access to established cohort & core clinical dataset

Patient Profile

  • Demographics (incl. ethnicity)
  • Date of Diagnosis 
  • Current symptoms
  • Vital signs 
  • Caregiver arrangements
  • Family, social, occupational history

Treatment  journey

  • ILD  and other medication codes
  • Current and previous medications
  • Medication duration & funding

Quality of Life

  • HRQoL (EQ-5D-5L) 
  • Leicester Cough Questionnaire (LCQ)
  • Living with Pulmonary Fibrosis (L-PF)
  • Hospital Anxiety Depression Scale ((HADS))

Customisable Dataset

Cohort customisation tailored to your research needs

Outcome Measures

  • Chronic Respiratory Disease Questionnaire (CRQ) – patient reported
  • Transitional Dyspnea Index (TDI)
  • Pulmonary Fibrosis Impact on Quality of Life Scale (PF-IQOLS)
  • Exacerbation rate
  • Hospitalisation rate

Objective biomarkers & tests

  • Pulmonary function testing
  • CT chest and other imaging
  • Six minute walk test

Digital biomarkers

  • Wearables/ devices for disease management
  • Apps and other digital health technologies

Answer key research questions with rapid access to custom data & insights

Longitudinal clinical and patient-reported data collection, builds a rich core clinical dataset.

This can be further augmented with the rapid collection of additional data from pre-consented patients within the cohort.

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