Every three years, the World Parkinson Congress (WPC) provides an international forum where health professionals, care partners and people with Parkinson’s disease (PD) come together to discuss the latest scientific discoveries, medical practices and caregiver initiatives related to Parkinson’s.
This year, the Parkinson’s Foundation will be attending WPC in Kyoto, Japan, and has been invited to present 10 research findings in the form of a poster at the Congress, which include:
Impact of offering genetic testing and counseling to people with Parkinson's disease in a clinical setting
The Parkinson’s Foundation genetic research initiative is a five-year, multi-center study in the U.S. that aims to offer genetic testing of LRRK2 and GBA1 genes in a clinical setting and genetic counseling to people with Parkinson’s. Study objectives include: 1) accelerate referral to precision medicine clinical trials; 2) improve PD care and research through knowledge of genetic status and clinical phenotype; 3) empower patients by providing genetic status within a clinical setting; 4) evaluate the impact and feasibility of returning genetic results through clinician vs. genetic counselor. By 2020, the study will track the genetic makeup of 15,000 people with Parkinson's across approximately 50 sites in the U.S.
A closer look at the unmet needs, research and care priorities for women with Parkinson's
Women and Parkinson's Teams to Advance Learning and Knowledge (Women and PD TALK) has established a national infrastructure to create the first patient-centered research agenda to help women and health care professionals be better informed about the unmet needs of women with Parkinson’s disease. The research agenda, Women and Parkinson’s: Closing the Gender Gap in Research and Care, focuses on nine priority areas of Parkinson’s research and care. We will focus on four of these priority areas in the next few years by hosting a convening to 1) identify critical research questions examining gender differences in Parkinson’s risk; 2) developing and evaluating a clinical shared-decision making tool; 3) sponsoring an education symposium focused on the mental health ; 4)well-being of care partners to women and developing self-management resources that target women newly diagnosed with Parkinson’s.
Improving clinical trials through the science of patient engagement
The Parkinson’s Foundation has been a leader in patient engagement for more than 15 years. Patient engagement means people with Parkinson’s and care partners are included in creating clinical trials. More and more, it is thought to be critical to the success of research. However, there are still gaps in how patient engagement is done and the tools that are available to do it. The Parkinson’s Foundation is addressing these gaps. Four projects are underway. One project highlights the expertise patient advocacy organizations bring to the table. Another project demonstrates an international partnership for patient engagement. A tool for patient engagement and a metric set were also developed. These projects are being evaluated. If they are successful, they will be expanded and replicated.
For a full list of all posters presented at the 5th World Parkinson Congress visit Parkinson.org/WPC.