PPMI Retention Update - ppmi-info.org · 6/20/2014  · –Packet of lay abstracts of results using PPMI data to be handed out at Retention Events ... Site Name # LPs completed %

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