Objective: To establish an integrated and fully remote registry for Parkinson’s disease (PD) in England, that leverages both electronic health records (EHR) and electronic patient-reported outcomes (ePRO) on a unique research platform.

Background: PD is a heterogeneous condition, in terms of its clinical manifestations, progression and determinants [1]. This calls for individualised treatment approaches and clinical trials that are designed to take account of this heterogeneity. One of the key challenges faced is difficulty in recruiting participants from diverse backgrounds that are truly representative of the PD spectrum [2]. Limited ability to travel to trial sites due to physical disability, geographical distance, or financial constraints could further deter patients from participating in research studies. Access-PD is a fully remote, next-generation registry that is designed to tackle these challenges by incorporating digital solutions for identification and recruitment of patients, as well as collection of longitudinal data.

Method: Potential participants are identified using data held in primary care EHR and engaged via a text message that takes them to a website for consent and registration. Once consented to the registry, participants are sent further questionnaires and home test kits to collect additional data. By combining routinely collected EHR data with ePRO and home testing, Access-PD aims to create a comprehensive database that allows researchers to effectively stratify patients into meaningful subgroups, perform analysis and identify patterns that can guide the directions of future research, including clinical trials.

Results: Following ethics approval in May 2022, the pilot phase of Access-PD involving 33 practices was launched in September 2022. Our initial data showed that 22% of the participants engaged via text message responded to the invitation. Two-thirds of them fulfilled the inclusion criteria and consented to join the registry. Of the first 184 patients recruited, 42% were female and 58% were male, with a median age of 71 years at the time of joining the registry.

Conclusion: Access-PD will facilitate and accelerate PD research by removing barriers and empowering patients by providing a channel for them to actively take part in studies that are most relevant and important to them.

References: 1. Greenland JC, Williams-Gray CH, Barker RA. The clinical heterogeneity of Parkinson’s disease and its therapeutic implications. Eur J Neurosci. 2019 Feb;49(3):328-338. doi: 10.1111/ejn.14094. Epub 2018 Oct 14. PMID: 30059179.
2. Simonet C, Bestwick J, Jitlal M, et al. Assessment of Risk Factors and Early Presentations of Parkinson Disease in Primary Care in a Diverse UK Population. JAMA Neurol. 2022;79(4):359–369. doi:10.1001/jamaneurol.2022.0003

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MDS Abstracts - https://www.mdsabstracts.org/abstract/access-pd-a-next-generation-registry-to-accelerate-parkinsons-disease-research/