Parkinson’s Disease Registry Advisory Committee
Second Meeting March 4th, 2022
1:00 pm – 3:00 pm

	Agenda	

Welcome
Approval of 1/16/22 Meeting Minutes (Vote)
Overview Parkinson’s Disease by Dr. Samuel Frank
Overview of Massachusetts ALS Registry by Lauren Fogarty
Committee Deliverables and Timeline Planning Discussion
Next Meeting
– March 23rd, 2022	2:00 pm - 4:00 pm

	Parkinson’s Disease Overview	

Parkinson’s Disease: An Overview
Samuel Frank, MD
Associate Professor of Neurology, HMS & BIDMC

	ALS Registry in MA: An Overview	

ALS Registry in Massachusetts: An Overview
Lauren Fogarty
Epidemiologist, Massachusetts Department of Public Health

	DISCUSSION	

Review of Committee Deliverables Homework assignments
Timeline Planning

	Deliverables	

1.What is the purpose, design, and functionality of the registry?
2.	What data will be collected? (including but not limited to demographic data to determine incidence and prevalence by areas of the Commonwealth
3.	How will the data be collected and disseminated?
4.	How to ensure privacy and confidentiality of data?
5.	How will the registry be implemented?

NEXT MEETING

MARCH 23, 2022
2:00 pm – 4:00 pm

	Adjournment	

Thank You
Mary Lou Woodford, BSN, RN, MBA, CCM
Parkinson’s Disease Registry Advisory Committee Project Manager Marylou.Woodford@Mass.Gov