Georgetown University held a symposium
to discuss the integration of patient-reported outcomes in research for neurodegenerative diseases,
including Alzheimer, Huntington, and Parkinson diseases.
Patient-Reported Outcomes (PRO) for Neurodegenerative Diseases Symposium
April 27-28, 2016
Pew Conference Center, 901 E Street NW, Washington, DC
Patient-Reported Outcomes (PROs) and patient preferences are increasingly incorporated in research and clinical practice to assess effectiveness of treatments from the perspectives of patients and their care partners. However, there are challenges with using PROs and preferences for research about diseases where patients experience cognitive decline.
This meeting brought together a comprehensive group of stakeholders involved in research and development of treatments for neurodegenerative disorders, including Alzheimer, Huntington, and Parkinson diseases. Participants engaged in discussion and collectively identified critical areas of unmet need for incorporating PROs in research and clinical care for patients with neurodegenerative diseases.
Co-organizers for this event included the Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI), and the Georgetown University Huntington Disease Care, Education, and Research Center (HD-CERC). Planning committee members included representatives from the U.S. Food and Drug Administration (FDA), Patient-Centered Outcomes Research Institute (PCORI), and industry, as well as patients and care partners.
- Build and strengthen relationships between key stakeholders, including patients, families or caregivers, researchers, clinicians, and regulatory decision-makers.
- Provide a platform for stakeholders to convene, collaborate, and critically assess areas of unmet need in each of the three areas: (1) PROs for Clinical Research and Medical Product Development, (2) PROs for Clinical Care, and (3) Patient-Centered Risk-Benefit Assessments for Regulatory Decision-Making and Clinical Practice.
- Patients and Care Partners
- Academic Research Investigators
- Researchers and Sponsors from Government (e.g., FDA, NIH)
- Researchers and Sponsors from Non-Government Organizations (e.g., PCORI, Patient Advocacy Organizations, Industry)
We are developing a paper for peer-reviewed publication, and we are planning for the 2017 symposium. We will update this site with information as it becomes available.