Objective: To update on AccessPD’s progress, emphasising the growth in patient recruitment, data integration, and the preliminary analysis aimed at advancing Parkinson’s disease (PD) research.

Background: Launched in September 2022, AccessPD aims to address the challenges of PD research by leveraging electronic health records and electronic patient-reported outcomes within a fully remote, integrated platform. By facilitating diverse and representative participant recruitment and enabling comprehensive data collection, AccessPD seeks to support the development of individualised treatment approaches and inform clinical trial design reflective of PD’s heterogeneity.

Method: AccessPD continues to expand by involving an increased number of General Practitioner practices across England, growing from 51 to 167 in 12 months. Potential participants are invited to sign up to the registry via SMS. By the end of 2023, DNA sample collection kits were dispatched to participants who consented for the collection of genetic data. Additional validated questionnaires, including the 8-item Parkinson’s Disease Questionnaire (PDQ-8), will be sent out in March 2024.

Results: Since the last report, the registry grew to 571 participants. The SMS click-through rate for AccessPD invitations rose to 33%, showing that 1 in 3 invited patients actively engaged by completing all questions. Participant demographics and disease profiles show an average enrollment age of 71, with disease onset at 65. The gender split is 62.2% male and 37.8% female. Disease stage reveals 13.1% who do not recognise impairment of movement, 30.7% with unilateral motor symptoms, 11.4% with bilateral symptoms, 44.7% with bilateral impact and walking/balance impairment, or needing daily living assistance. A total of 289 DNA test kits were collected to analyse geneic risk factors associated with PD.

Conclusion: Having surpassed 500 consented participants and begun data analysis, the registry is set to offer key insights into PD heterogeneity, patient needs, and potential therapeutic avenues. Initial exploration of the dataset has established its capability to identify early-stage PD patients, pinpoint individuals with specific symptoms such as dyskinesia, and support rapid, customised trial recruitment for interventions such as device-aided therapy. These applications, while yet to be utilised, demonstrate the dataset’s potential to significantly impact PD research.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/accesspd-registry-update-accelerating-parkinsons-disease-research-through-integrated-digital-solutions/