PPMI Data Access. Chelsea Caspell-Garcia, Eric Foster. The University of Iowa. PPMI Annual Meeting May 12-13, 2015

Similar documents
Psoriasis Registry Graz Austria. User Manual. Version 1.0 Page 1 of 19

Introduction to using the CALERIE Public Use Database

Demystifying Laboratory Data Reconciliation. The issues at hand

The BIRO software. 1st EUBIROD Annual Meeting, Dasman Centre, Kuwait City

i2b2 User Guide Informatics for Integrating Biology & the Bedside Version 1.0 October 2012

eclinical ecrf Guideline

Alpha 1 i2b2 User Guide

Disaster Recovery Tracking Tool: User Instructions

Setting Up the Randomization Module in REDCap How-To Guide

Registering and submitting data for multiple healthcare organizations... 4

The Basics. As of December 12, 2016

SCHOOL USER GUIDE LPN - BSN PROGRAM

OC RDC 4.6. User Guide

Comprehensive Capabilities Comparison

ELECTRONIC SITE DELEGATION LOG (esdl) USER MANUAL

Quick Guide to TIDE: Adding Users and Students

Guidance for building Study and CRF in OpenClinica

Subject Area Data Element Examples Earliest Date Patient Demographics Race, primary language, mortality 2000 Encounters

Key. General. Host Account Functionality. Included, no-cost Not Included Add-on/Low cost $ Add-on/High cost $$$

Genetic & Molecular Lab Testing

LONI IMAGE & DATA ARCHIVE USER MANUAL

Paper FC02. SDTM, Plus or Minus. Barry R. Cohen, Octagon Research Solutions, Wayne, PA

Creating Classes and Issuing Licenses TUTORIAL

DF/HCC Operations for Human Research Subject Registration Procedures

AMEE-ESME Online courses. Contents. How to Moodle. Guide AMEE-ESME Online courses... 1 Login... 2 Course page navigation Webinar...

Select the group of isolates you want to analyze using the chart and statistics tool Create a comparison of these isolates Perform a query or

PROVIDER WEBSITE SITE ADMINISTRATOR GUIDE » PATIENT INQUIRY» CLAIM CENTER» FIND A DOCTOR» CLAIMS EDITING SYSTEM (CES)

Note: If a New Account Representative provided you a NetTeller ID at new account opening, skip this section of the enrollment process.

Short introduction. for the. the NIC-PD study. - productive and training database -

Data Currently Available (And How to Access It) Chance Hohensee Data Training September 9, 2016

Maximizing Statistical Interactions Part II: Database Issues Provided by: The Biostatistics Collaboration Center (BCC) at Northwestern University

Creating an Online Course

Platinum Planner. School Admin Manual. ã Platinum Educational Group Phone

Welcome! A few things to go over before we get started

Office of Clinical Research. CTMS Reference Guide Report Building

Standard Safety Visualization Set-up Using Spotfire

Objectives. Demonstrate how quality reporting must be uploaded to Millennium

Canvas Quick Guide for Students

My Care Plus Your reference guide. MyCarePlusOnline.com

UCare Therapy Authorization Web Application. User Guide

Mobile Banking User s Guide

Powered By. Student Guide

FCDS IDEA USER ACCOUNT Page 1 2. FACILITY ACCESS ADMINISTRATOR (FAA) Page 3 5. FCDS ABSTRACTOR CODE Page 6 9

Investigator Activities Quick Reference Guide. Sanofi/Genzyme October 2013

ehepqual- HCV Quality of Care Performance Measure Program

New UK SIRT Registry Quick Start Guide 2013

Tenant Coordination Website User Guide For Tenant Coordinators

Business Process Document Student Records: Defining Class Enrollment Blocks

ACRIN 4703 Detection of Early lung Cancer Among Military Personnel Study 1 (DECAMP 1): Diagnosis and Surveillance of Indeterminate Pulmonary Nodules

Please note: This guide is intended as a simple overview for using your online account. It does not cover every detail of the website.

Discrepancy Management

Electronic Multiple Sclerosis Patient Clinical Database. User Manual

Modelling Personalized Screening: a Step Forward on Risk Assessment Methods

Physician Quality Reporting System (PQRS) Physician Portal

SCHEDULE AN APPOINTMENT

Design of Case Report Forms. Case Report Form. Purpose. ..CRF Official clinical data-recording document or tool used in a clinical study

HMIS APR v5.1 CSV Export for Sage

ALEA instructions for Local Investigators

OpenClinica - Data Import & Export

SIM CLINICAL QUALITY MEASURES

Tenant Coordination Website User Guide For Tenants

OnCore Enterprise Research. Exercises: Subject Administration

Short introduction. for the

LabTrak Easy and Affordable. Laboratory Information System Solutions for the Physician Office Laboratory, Pain Management Clinics and Specialty Labs

Physician Quality Reporting System Program Year Group Practice Reporting Option (GPRO) Web Interface XML Specification

2015 PMF. Data Collection and Validation. A Guide to FTP and SharePoint. Released April Questions? Please contact

Table of Contents. Page 1 of 51

Compliance Document Manager User Guide

ACCUPLACER Placement Validity Study Guide

Discoverer Viewer. User Manual. for SDS

Data Collection & Management

NPDA User Guide: How to submit your data by uploading a CSV

i2b2 User Guide University of Minnesota Clinical and Translational Science Institute

ESID Online Registry

ASEBA PC 2015 Procedures Manual. (For Updated Procedures, go to PCProcedures.pdf)

Using the New UCOP UAT Validation Reports For Undergraduate Admissions

Manage My Subjects How to rollover an existing subject

Creating an Online Course

Entering Data into EvaluationWeb

APPLIED RESEARCH WORKS, INC.- COZEVA. Specialist Practice Support Guide

Frequency Distributions and Descriptive Statistics in SPS

Me Learning User Guide

Local Lab Normal Range Management Tool (LNMT) Site Job Aid for Late Stage Development

PDS Detailed User Guide

Enroll-HD Data Handling Manual

FCDS IDEA User Accounts

Registration and account management. NPDA User Guide: How to register to use the NPDA data capture system

User Guide. Web Intelligence Rich Client. Business Objects 4.1

Create a SAS Program to create the following files from the PREC2 sas data set created in LAB2.

ecrt Basics Frequently Asked Questions

OnCore Enterprise Research. Exercises: Subject Administration

RCR Registry Signup Portal Steps for Signup Updated September 2015

How to Enroll Online in Northern California Training Academy Courses

Tools for Researchers

1. Study Registration. 2. Confirm Registration

Submission Guidelines

X2 1:1 Meeting Scheduler Quick Start Guide

Corporate Registry: Access Code Guide. Corporate Registry

Recording Vital Signs and Test Results in Med-Center

NATE PROCTOR USER GUIDE Industry Competency Exam

Transcription:

PPMI Data Access Chelsea Caspell-Garcia, Eric Foster The University of Iowa PPMI Annual Meeting May 12-13, 2015

Outline Navigating the LONI website Requesting data access Downloading the data Structure of the data Grouping of tables Documents to answer common data questions PPMI Populations Finding enrolled subjects Example: Finding the mean change from baseline to 1- year by gender

Navigating the LONI Website How to request data access Go to www.loni.usc.edu and click on PPMI, or go directly to www.ppmi-info.org Click on Download Data on the right sidebar Click on Apply for Data Access and fill out the request form After your request is approved, you will receive an email with a link to create your password and finish setting up your account on LONI

Requesting Data Access

Requesting Data Access

Navigating the LONI Website How to download the data Login to LONI and click on the Download tab at the top To see all available data files and other files, click on ALL at the bottom of the left sidebar Check the boxes next to specific files you want to download, or check the 2 Select ALL boxes at the top to download everything Click on the Download>> button at the top right Multiple files will be downloaded in a.zip file

Downloading the PPMI Data

Data Structure Currently there are 72 data tables (.csv files) comprising both clinical and lab data Clinical Data Tables Each data table has a file name and a Page Name (variable: PAG_NAME) Screening/Demographics = SCREEN Adverse Event Log = AE Data Dictionary refers to tables by their Page Name

Lab Data Tables Data Structure Includes DaTSCAN SBR results, CSF biospecimen results, blood chemistry and hematology, etc. Lab data often structured differently than clinical data May not have a Page Name in the data file Subjects may have multiple observations for each visit because of multiple types of tests done Variables may have different names and/or may be coded differently than those in the clinical data tables Gender (values of 0, 1, 2 in clinical data; values of Female, Male in certain lab data tables) Diagnosis (variable = APPRDX in clinical data; variable = DIAGNOSIS in lab data)

Data Structure Useful files to figure out the variables Data Dictionary lists all variables in each data table with a brief description CRFs (do not list variable names) Code List lists every categorical variable with each possible response (CODE) and what each category means (DECODE) CODE = 1; DECODE = Yes PPMI Derived Variable Definitions and Score Calculations

PPMI Populations Finding enrolled subjects Need two tables: SCREEN (Screening/Demographics) and RANDOM (Randomization table) Enrolled subjects must appear in both tables Enrolled subjects must also have a non-missing enrollment date (ENROLLDT from the RANDOM table)

PPMI Populations APPRDX Variable Value (from the SCREEN table) Subject Cohort 1 Parkinson s Disease 2 Healthy Control 3 SWEDD 4 Prodromal 5 Genetic Cohort PD 6 Genetic Cohort Unaffected 7 Genetic Registry PD 8 Genetic Registry Unaffected

Example: Find Mean One Year Change in α synuclein for Enrolled PDs by Gender Start with the enrolled subject data set Subjects must be in both the SCREEN and RANDOM tables Subjects must have a non-missing ENROLLDT The PD population will have a diagnosis value of APPRDX = 1 Two ways to identify gender: From the SCREEN table, create a new variable for gender: Gender = 0 or 1 is female Gender = 2 is male From the BIOSPECIMEN_ANALYSIS_RESULTS table, use the gender variable (Special for the biospecimen_analysis_results table, not available in all lab data tables!)

Example Continued Find α synuclein measures from data table BIOSPECIMEN_ANALYSIS_ RESULTS TESTNAME = CSF Alphasynuclein The variable TESTVALUE is the α synuclein measure Merge together the enrolled PD subjects and the α synuclein measures

Example Continued We will need both the baseline and 1-year events CLINICAL_EVENT = Baseline Collection CLINICAL_EVENT = Visit 04 Take the difference between the variable TESTVALUE from the two set of records Calculate the mean of the differences while stratifying by the new gender variable

Example: Special Considerations ST Visits These are visits where symptomatic therapy was begun These did not necessarily align with planned study visits They did, however, take the place of some study visits The SIGNATURE_FORM (PAG_NAME = SIG) contains all of the planned study visits for each subject Any study visits that were replaced by ST visits will have a note in the comments on this table DATSCAN SBR Data: no ST visits (all have been accounted for within the DATSCAN SBR data table)