AccessPD

An ACCESS Cohort Study of patients with Parkinson’s Disease

97%

Patients engage in sub-studies

700+

Consented patients
IRB approved protocol

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 medical 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 traveling 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

  • Generate funding for research

  • Minimize the lengthy process of initiating enrollment in person

  • Make your grant applications more competitive

  • Give patients access to low burden studies from the comfort of their home

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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 programs

  • 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)/li>
  • Date of Diagnosis
  • First symptoms and onset
  • Current symptoms
  • Vital signs
  • Caregiver arrangements
  • Family and social history

Treatment Journey

  • PD and other 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))

Customizable Dataset

Cohort customization tailored to your research needs

Outcome Assessment Scales

  • Parkinson’s Disease: Wearing Off Questionnaire-9
  • Non-Motor Symptom Scale – patient reported
  • Hauser Diary
  • Scales for Outcomes in PD – Autonomic Dysfunction (SCOPA-AUT)
  • King’s Parkinson’s disease Pain Scale (KPPS)

Objective Biomarkers & Tests 

  • Olfaction (e.g. 40-item UPenn Smell Identification Test, 6-item PredictPD Smell Test)
  • Salivary biomarkers (e.g. Alpha-synuclein (α-Syn)

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

AccessPD participant