Category: Parkinson's Disease: Genetics
Objective: Established in 2022, the AccessPD registry aims to create a comprehensive database of electronic health records, self-reported outcomes, and genetic data from Parkinson’s disease (PD) patients. This report details our experience with remotely collecting DNA samples from AccessPD participants to analyze genetic variants and risk factors associated with PD.
Background: PD is linked to established genetic factors, with approximately 5% of individuals with PD displaying the GBA1 genetic mutation (depending on ancestry). About 15% of PD patients demonstrate a familial history of PD among their first-degree relatives. This sub-study focused on gathering genetic information through a non-invasive saliva DNA collection kit.
Method: Existing AccessPD participants were invited to participate in the DNA collection study via letters and SMS. The study facilitated remote participation, with DNA collection kits sent to participants at home. Participants could delegate consent to nurses if needed, and a pre-paid return envelope was provided. Engagement outcomes and DNA sample collection were monitored.
Results: Out of 399 invited AccessPD participants, 335 (84%) consented to this DNA collection substudy. Engagement through SMS led to a 68% click-through rate, meaning 68% of participants clicked on the invitation to learn more about the study. Support calls and nurse interventions were specifically deployed for engaging those participants who did not respond to digital prompts, addressing the needs of individuals with limited access to technology. In this effort, 85 follow-up calls were made, resulting in 54 patients signing up via nurse delegation. DNA kits were distributed 7 weeks after engagement, and 289 of these kits were returned within 11 weeks from the first engagement date. It’s worth noting that 21.4% of AccessPD participants reported having a family history of PD.
Conclusion: The high consent rate and quick engagement in the DNA study result from a unique approach to patient identification, engagement, and support. Prompt re-engagement of existing AccessPD participants, varied outreach channels, and remote participation for those unable to travel all contributed to the study’s success. The study’s findings are anticipated to provide valuable insights into genetic factors linked to PD, accelerate opportunities for genetically-stratified clinical trials, foster patient engagement, and guide future research within the AccessPD registry.
To cite this abstract in AMA style:
Y-H. Chang, E. Shelton, H. Chohan, M. Periñan, A. Noyce. Remote DNA Collection for Parkinson’s Research: Insights from AccessPD [abstract]. Mov Disord. 2024; 39 (suppl 1). https://www.mdsabstracts.org/abstract/remote-dna-collection-for-parkinsons-research-insights-from-accesspd/. Accessed December 3, 2024.« Back to 2024 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/remote-dna-collection-for-parkinsons-research-insights-from-accesspd/