europsychology & Aging Laborato

Transcription

1 europsychology & Aging Laborato Field-testing multilingual clinical assessment using DDI standards David K. Johnson, PhD. University of Kansas K

2 Epidemiology and the Development of Alzheimer s Disease (EDAD) A Collabora)on of the University of Kansas with the University of Costa Rica R21 TW009665

3 R21 TW009665

4 D in La<n America Low and middle income na)ons will experience an unprecedented growth of the elderly popula)on and subsequent increase in age- related neurological disorders increased incidence (earlier detec)on/diagnosis becomes more available) introduc)on of effec)ve life extending technologies that yield increased dura)on of survival with disease. Worldwide prevalence and incidence of Alzheimer s disease will increase as life expectancy increases across the globe

5 hy Costa Rica? Nicoya Peninsula = Blue Zone (more older adults living 90+) Equivalent Life Expectancy (CR=35 th vs. US=33 rd ). Hispanic Paradox: Rural older adult Costa Ricans live longer than we would expect given what we know (predict) about mortality Popular culture of par)cipa)on Strong university connec)ons for advanced training

6 niversity of Costa Rica (UCR) University of Kansas (KU) Century long tradi)on of interna)onal academic exchange Share over 30 academic training programs Trained over 1000 exchange students. By June 2011 centralized IT services at KU will support most of the UCR library and administra)ve services. Both iden)fied health sciences as the next shared ini)a)ve and the KU- UCR endowment fund awarded $25,000 development grants Iden)fy faculty and resources at UCR to extend the KU AMP s research success to include Costa Rican clinical samples collected by UCR affiliates.

7 Alzheimer Disease Center (P30 AG035982) der in the US for the study of exercise and tabolism on brain health and lifestyles that vent Alzheimer s disease Trial for Exercise, Aging & Memory (TEAM; R01 AG034614) Alzheimer Disease Exercise Program Trial (ADEPT; R01 AG033673) KU Alzheimer Preven)on Program (APP) Alzheimer Preven)on through Exercise Program (APEX; R01 AG043962) An)- Amyloid in Asymptoma)c Amyloidosis (A4 ) Aspirin in Reducing Events in the Elderly (ASPREE) Trial Of Resistance Training for Increased AD Suscep)bility (TORTIAS; KL2 TR000119) Clinical Transla)onal Science Award (FRONTIERS CTSA; UL1 TR000001)

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9 HARM s Aim to Build Infrastructure Extend the clinical research infrastructure of KU AMP to the University of Costa Rica and build its clinical research exper)se for neurological diseases. Step 1: Extend preexis)ng KU- UCR informa)on technologies to underdeveloped Costa Rican clinical research centers; the IIP and CCP. KU will host data capture, management, and storage systems on the shared KU- UCR network system. Step 2: Train exis)ng faculty at UCR for clinical assessment and research methods in the assessment and treatment of neurological diseases in the developing world to support future clinical research in Costa Rica and across Central America. Step 3: Create a baseline for a sustainable longitudinal study of La)n American aging and neurological diseases modeled on the KU Alzheimer and Memory Program.

10 HARM Goal 1: reate a mul)lingual applied clinical research library (to- date over 400 nique instruments in 850 different applica)ons) that can be shared idely by inves)gators throughout the US and La)n America to cilitate high quality biobehavioral research on medical issues ermane to Hispanic Americans.

11 BUT

12 Low Resource World Time & Money Human fallibility Turn over of trained students Tracking significant events Mid- study checks Big messy library of instruments A tornado of possible tests Mul)ple exis)ng studies with history and inflexible admin systems Protocol management grew complex by adding Spanish

13 erhaps I could use this opportunity to create tools that could index e tornado of instruments I use over and over again??? o succeed harmonizing data collec)on across 5 different research rograms taking place many sites in 2 languages, we needed to create HARM: he Center for Hispanic American Research Methods (CHARM) is a oopera)ve of US and La)n American research laboratories interested in oordina)ng biobehavioral research. HARM relies on DDI and metadata standards to implement, collected, anage, and archive clinical research data

14 linical Research Data Lifecycle

15 U Instrument Library (KUIL) - Philosophy KUIL is a distributed research process If the adop)on of DDI is easy and commiqed to from beginning of many research studies then aggrega)ng data reaches an economies of scale KUIL is a large database of pre- formed items that are libraried (i.e., ra)onally stored using standard conven)ons) in a large assessment database that can be accessed and implemented in a user friendly interface Designed to aid grassroot researchers to economically implement a sophis)cated study using best- prac)ce assessment. Efficient Collabora)ve Because the heavy burden of adop)ng DDI at the start up is carried by the KUIL then that cost is distributed across many broad shoulders. But Planning the interface becomes cri)cal Instrumenta)on needs verng Par)cipa)on in item/instrument/method valida)on studies need to shared by all users - part of the user agreement

16 U Instrument Library (KUIL) Goals Library of Ready- Mades Purposing Instrument Library for Inves)gators Translate Instruments (Project BabelFish) Harmonize Crea)ng concordance tables Create a ac)onable plan to Validate Instruments Dream about Pipeline Processes

17 sted Rela<onal Database any Items to One Instrument any Instruments Belong to Many Baqeries o Instruments ouen published in an applied baqery o However, same instrument can be used over and over in many different inves)gator- ini)ated inves)ga)ons o Rarely is the original published applied baqery used in its en)rety in research that targets sampling specific domains

18 hase 1. Content Genera<on Step 1. Data Entry in English Step 2. Content Veqed by 2x RA Step 3. Test Protocols Generated (Electronic, PDF, & OCR Paper) Step 4. Content Veqed by Clinical Supervision Team Step 5. Content Published to CHARM repository Late Stage Revisions then incorporate user feedback revisions

19 Colec<ca/QueXF

20 teps to create and use ques<onnaire 1. Data Dic)onary 2. Import into Colec)ca 3. Export xml code from Colec)ca 4. Edit xml code, to compile quexml requirements 5. Import xml code into quexml to export a pdf 6. Fill up the ques)onnaires 7. Import filled ques)onnaires into quexsf 8. Export data from quexf in.csv format

21 ata dic<onary

22 Import into Colec<ca

23 Export xml code from Colec<ca

24 xml code

25 quexml interface

26 Example pdf

27 Filled up pdf s

28 Quexf interface

29 ound Tripping Instrument Content in Collec)ca. Exported to Google Sheets with handles (names, tags, formats etc.) Worked on collec)vely in developing world using common resources Google Sheets has built- in func)on for machine transla)on A process of quality controls Authorship / Content signing moves the sheet through the process End of Process is reimpor)ng data slice back to CHARM repository

30 hase 2. Transla<on Process Step 1. Machine Transla)on (Google Sheets Func)on) Step 2. Level 1 Edi)ng by Graduate Students Step 3. Level 2 Content Expert A Review Step 4. Test Protocols Generated (Electronic, PDF, & OCR Paper) Step 5. Level 3 Content Expert B Review Step 6. Content Returns to CHARM repository Late Stage Revisions then incorporate user feedback revisions

31 linical Research Data Lifecycle