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PPMI Retention Update Annual Investigators Meeting May 7 th , 2014 Danna Jennings, R&R Working Group Chair, PPMI Site PI Vanessa Arnedo, MJFF
PPMI Retention Update
Annual Investigators Meeting May 7th, 2014
Danna Jennings, R&R Working Group Chair, PPMI Site PI
Vanessa Arnedo, MJFF
PPMI Status Update
Cohort Enrolled Recruitment Status
De Novo PD 423 Complete
Controls 196 Complete
SWEDDs 64 Complete
Hyposmia 7 Ongoing
RBD 11 Ongoing
Genetic Cohort 8 Ongoing
Genetic Registry 24 Ongoing
Total 733 Active=710
Goal: Retain subjects by keeping them engaged to participate in study visits over time – cultivate volunteers as key partners in the study
Retention Progress to Date
• Overall study retention is 95%!
• 10 sites with 100% retention: – Oregon Health & Science University
– University of Washington
– The Parkinson’s Institute
– Baylor College of Medicine
– University of South Florida
– Johns Hopkins University
– University of Cincinnati
– Imperial College London
– PD & Movement Disorders Center of Boca Raton
– Macquarie University
Retention Strategies
Goal: Maintaining the stamina and loyalty of enrolled subjects over time
• Site Relationship with Subjects – maintaining relationship with participants, accommodating
their needs
• Annual Retention Events – Participant appreciation lunch/dinner – Opportunity to update participants on study status and
published data
• Scientific Update packet – Packet of lay abstracts of results using PPMI data to be handed
out at Retention Events
• Participant Newsletters – 2x per year – study updates and special profiles
Retention Strategies Cont.
• Giveaways – PPMI token of appreciation at
each study visit – T-shirts, thera-putty, umbrellas,
etc. – Thank you book
• 42 month giveaway, collection of Thank you letters
• PPMI Study Update Calls – Quarterly calls featuring
presentation by researcher on PPMI data, and Q&A session
– Recordings available at www.ppmi-info.org/participants/
– Next call: May 15th @ 1pm EST
PPMI Recruitment & Retention Working Group
• Danna Jennings
(Chair)
• Alexandra Gaenslen
• Carey Christiansen
• Carlie Tanner
• Daniela Berg
• Christine Hunter
• Tanya Simuni
• Cathi Thomas
• Hubert Fernandez
• Zoltan Mari
• Vanessa Arnedo
• Karen Williams
• Jim Leverenz
• Claire Meunier
PPMI Patient Committee
• Sheryl Jedlinski
• Jean Burns
• Peter Burne
• Bill Shepard
• Carey Christensen
PPMI Site Awards
Recognizing site teams for outstanding effort
Prodromal Enrollment
Site Name Hyposmic Enrolled
RBD Enrolled Total Enrolled
Barcelona 0 5 5
UPenn 3 2 5
OHSU 2 0 2
Northwestern 0 2 2
Kassel/Marburg 0 2 2
IND 1 0 1
Cleveland Clinic 1 0 1
UAB 0 1 1
Top Prodromal Enrollment We have a tie!
Hospital Clinic de Barcelona University of Pennsylvania
Both sites have enrolled 5 Prodromal participants…Great Job!
Genetic Enrollment Site Name LRRK2
Cohort Consented
LRR2 Registry Consented
LRRK2 Cohort Enrolled
LRRK2 Registry Enrolled
Total Enrolled
Boca Raton 9 12 7 12 19
Barcelona 7 12 3 11 14
Emory 0 3 0 3 3
Northwestern 1 0 1 0 1
The PI 0 1 0 1 1
Trondheim 5 0 0 0 0
San Sebastian 4 0 0 0 0
Cleveland Clinic 1 0 0 0 0
Banner 1 0 0 0 0
Upenn 0 1 0 0 0
Top Genetic Enrollment
PD & Movement Disorders Center of Boca Raton
7 enrolled in LRRK2 Genetic Cohort, 12 enrolled in LRRK2 Genetic Registry!
Top Rate of Genetic Enrollment
Hospital Clinic de Barcelona
3 enrolled in LRRK2 Genetic Cohort, 11 enrolled in LRRK2 Genetic Registry in 4 months!
Timely Data Entry (Over 85%)
Site Name Pages Completed % Timely
Barcelona 449 99.6
IND 12,502 95.1
UCSD 2,738 93.2
Boston University 4,414 92.1
Kassel/Marburg 4,954 90.9
UAB 5,578 89.6
Innsbruck 2,805 89.5
The PI 4,595 89.2
Upenn 5,038 88.3
*Data is considered to be entered ‘timely’ if entered within 14 days of assessment
Top 3 Sites with Timeliest Data Entry
Boston University
In 3rd place, Boston University!
Over 4,400 pages completed, 92.1% timely!
Top 3 Sites with Timeliest Data Entry
University of California San Diego
In 2nd place, University of California San Diego!
Over 2,700 pages completed, 93.2% timely!
Top 3 Sites with Timeliest Data Entry
Institute for Neurodegenerative Disorders
In 1st place…we have a tie!
Over 12,000 pages completed, over 95% timely!
Hospital Clinic de Barcelona
Of almost 450 pages completed, 99.6% were entered timely!
Expected Completion of Scheduled Assessments
Site Name # LPs completed
% Expected LPs Completed
Macquarie 12 100
Emory 77 99
Cincinnati 25 96
UPenn 82 94
IND 191 93
Imperial 24 92
Banner 40 91
Boca Raton 10 91
Site Name % Expected Visits Completed
IND 100
OHSU 100
Imperial 100
Salerno 100
Northwestern 98
Cleveland Clinic 98
UCSD 98
The PI 98
Baylor 98
Upenn 97
Tuebingen 97
Kassel/Marburg 97
Innsbruck 96
Boston 96
Sites with over 90% of Expected LPs Completed! Sites with over 95% of Expected Visits Completed!
Sites with 100% of Expected Visits Completed
• Institute for Neurodegenerative Disorders
• Oregon Health & Science University
• Imperial College of London
• University of Salerno
Excellence in Hyposmia Recruitment
Banner Sun Health Research Institute
This site has consented 50% of all referrals, and is a top site for number of surveys returned to the Olfactory Core
Most Likely to Contribute
Karen Williams Northwestern University
This site team member has been the most likely to contribute ideas and suggestions to the Monthly PPMI Operations/Recruitment and Retention Calls
Top Advocate for WRI
Linda Rees Parkinson’s Institute
This site team member has been the top advocate for the PPMI Genetic Widespread Recruitment Initiative in collaboration with the GCC team
