ppmi retention update - ppmi-info.org · 6/20/2014 · –packet of lay abstracts of results using...
TRANSCRIPT
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PPMI Retention Update
Annual Investigators Meeting May 7th, 2014
Danna Jennings, R&R Working Group Chair, PPMI Site PI
Vanessa Arnedo, MJFF
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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
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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
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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
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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
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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
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PPMI Patient Committee
• Sheryl Jedlinski
• Jean Burns
• Peter Burne
• Bill Shepard
• Carey Christensen
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PPMI Site Awards
Recognizing site teams for outstanding effort
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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
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Top Prodromal Enrollment We have a tie!
Hospital Clinic de Barcelona University of Pennsylvania
Both sites have enrolled 5 Prodromal participants…Great Job!
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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
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Top Genetic Enrollment
PD & Movement Disorders Center of Boca Raton
7 enrolled in LRRK2 Genetic Cohort, 12 enrolled in LRRK2 Genetic Registry!
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Top Rate of Genetic Enrollment
Hospital Clinic de Barcelona
3 enrolled in LRRK2 Genetic Cohort, 11 enrolled in LRRK2 Genetic Registry in 4 months!
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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
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Top 3 Sites with Timeliest Data Entry
Boston University
In 3rd place, Boston University!
Over 4,400 pages completed, 92.1% timely!
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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!
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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!
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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!
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Sites with 100% of Expected Visits Completed
• Institute for Neurodegenerative Disorders
• Oregon Health & Science University
• Imperial College of London
• University of Salerno
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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
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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
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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