ACCESS Cohort Studies AccessILD

AccessILD

An ACCESS Cohort Study of patients with Interstitial Lung Disease

97%

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.

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

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

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

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

Talk to us about your research requirements

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.