Parkinson’s Disease

Next Generation Registry

Access-PD is a dynamic real-world registry offering access to granular data from Parkinson’s Disease patients to support evidence creation for academic and industry researchers.

Unlike any other registry, Access-PD’s core dataset links health records, patient reported outcomes, and DNA samples with the capability to augment this data further through bespoke nested projects.

These nested projects can rapidly answer specific research questions without the need to run standalone studies from scratch.

Gain bespoke insights & outcomes. In one study.

  • Patient Journey
  • Disease Burden & Unmet Need
  • Comparative Effectiveness
  • Medication Adherence
  • Precision Medicine Research
  • Biomarker Research
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Clinical outcomes, PRO’s and biosamples to be collected as part of Access-PD.

Among the data collected, key outcome measures to inform your research include:
  • Clinical Data (from patient’s EHR record)
    • Demographics
    • Comorbidities
    • Date of Parkinson’s Diagnosis
    • Date of Symptom Onset
    • Medication History
    • Family Medical History
  • Patient Reported Outcomes
    • Symptom Identification and Severity
    • HRQoL
    • Activities of Daily Living
  • Biosample
    • DNA Testing

Examples of additional data we can collect for nested projects

    • MDS-UPDRS Questionnaire (motor and non-motor components)
    • Hoehn & Yahr scale
    • Clinical Impression of Severity Index (CISI-PD)
    • Autonomic Function (SCOPA-AUT)
    • Cognition Assessment (MoCa)
    • Hospital anxiety Depression scale
    • Sleep Questionnaire (Epworth scale, RBD screening)
    • QoL (EQ-5D, PDQ-39)
    • Environmental Risk Factors (MERQ-PD-B, PD-RDU-Q)
    • King Pain Scale
  • Objective Tests
    • Olfaction (UPSIT Smell Test)
    • Motor Keyboard Tapping (Bradykinesia Akinesia Incoordination Test)
  • Biosample
    • Serum
    • Whole Blood
    • Urine
    • Skin

Find out more

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For a clear picture of how uMed could work for you, book a free session with our team.

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