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ACCESS Cohort Studies AccessPD

AccessPD

An Interactive Parkinson's Disease registry with research-consented patients

85%

Completion of PROs & wearables

1000+

Consented PD patients

Access 10m

UK & US patients

Accelerated evidence creation for Parkinson’s Disease research.

AccessPD addresses specific evidence gaps within Parkinson’s 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 characterised 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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Powered by uMed’s ACCESS Research Platform  

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

Core elements collected at baseline every 6 months

Patient profile 

  • Demographics (incl. ethnicity)
  • Date of Diagnosis
  • First symptoms & onset
  • Current symptoms
  • Genotype (from home testing kit)
  • Vital signs
  • Caregiver arrangements
  • Family and social history

Treatment Journey

  • PD medication codes
  • Current and previous medications
  • Medication duration & switching

Quality of Life

  • HRQoL (EQ-5D-5L)
  • Parkinson’s Disease Questionnaire (PDQ-8)
  • Sleep (RBD Screening Questionnaire (RBDSQ)
  • Hospital Anxiety Depression Scale ((HADS))

Customisable Dataset

Fit-for-purpose endpoints are collected upon request

Outcome Assessment Scales

  • Parkinson’s Disease: Wearing Off Questionnaire-9
  • MDS-UPDRS Parts IB & II
  • Hauser Diary
  • Scales for Outcomes in PD – Autonomic Dysfunction (SCOPA-AUT)
  • King’s Parkinson’s disease Pain Scale (KPPS)
  • Hoehn & Yahr Scale
  • Clinical Impression of Severity Index for PD (CISI-PD)
  • Montreal Cognitive Assessment
  • The Schwab and England Activities of Daily Living

Objective Biomarkers & Tests

  • Olfaction (e.g. Smell Test)
  • Salivary biomarkers (e.g. Alpha-synuclein)

Digital Biomarkers

  • Movement & sleep disturbance monitoring (PKG movement recording watch)
  • ON/OFF monitoring (STAT-ON holter)
  • Parkinson’s e-diary (e.g. KinesiaU smartphone app)

Answers 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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Use Case

Patient Perspectives

“It's been 5 years since my diagnosis but this is my first time taking part in Parkinson's research because of my poor mobility. Being able to take part despite having no internet is a big positive and your nurses make this possible.”

Carole Henrickson, 75, Hull

AccessPD participant