Online data repository of research in the cognitive sciences

Question

Sharing data is an important part of science (e.g., see APA discussion). It's also often useful to be able to have access to datasets when teaching students how to analyse data in the cognitive sciences.

• What online data repositories for research are available in the cognitive sciences (e.g., psychology, psychiatry, cognitive science, etc.)?

Ideally, it would be good to include:

• a link to the repository
• an overview of the size of the repository
• the disciplinary content of the repository
• whether there are restrictions on access and use

Answer 1

The ADNI project (2004--ongoing) aims at characterizing change in cognitive functions and brain structures with age, with a particular emphasis on Alzheimer's disease and neuroimaging.

From the website,

The overall goal of this huge project is to define the rate of progress of mild cognitive impairment and Alzheimer's disease, to develop improved methods for clinical trials in this area, and to provide a large database which will improve design of treatment trials. We expect that this project will provide information and methods which will help lead to effective treatments for Alzheimer’s disease, leading to effective prevention.

Data that are collected include: demographics, clinical data, neuroimaging (MRI/PET) data, and a wide range of cognitive tests. (More on ADCS website.) Details about protocols, available data can be found under ADNI Scientist's Home. In particular, data are available on ADCS. Please note that you must write an application to get the data (as is often the case).

Answer 2

The PROMIS project (funded by NIH) built upon a large scale US epidemiological study to assess patient-reported chronic disease outcomes. Data were collected on general population and multiple disease populations in different centers.

From the website,

Patient Reported Outcomes Measurement Information System (PROMIS) is a system of highly reliable, precise measures of patient–reported health status for physical, mental, and social well–being. PROMIS tools measure what patients are able to do and how they feel by asking questions. PROMIS’ measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment.

Its penultimate goal is to build a calibrated and cross-cultural item bank to assess patient reported outcomes (in particular, disease-specific quality of life, mental health, social relationships and personality traits), for adults and children. The main domains that are covered are described in the Domain Framework. Data are publicly released, but you have to write a short application to access them.

Answer 3

The Inter-University Consortium for Political and Social Research (ICPSR) provides 8000+ data sets. Topics include aging, criminal justice, education, or health.

As an example, here is my favorite, the summary of the "500 Family Study". This study includes questionnaire, cortisol, and experience sampling data:

The 500 Family Study was designed to obtain in-depth information on middle class, dual-career families living in the United States. To understand the complex dynamics of today's families and the strategies they use to balance the demands of work and family, over 500 families from 8 cities across the United States were studied. To address different issues facing parents with older and younger children, families with adolescents and families with kindergartners were included in the sample. Working mothers and fathers are now splitting their time between their responsibilities to their family, and to their respective occupations. This study of 500 families explores how work affects the lives and well-being of parents and their children.

Answer 4

The IQSS Dataverse Network looks good.

From the website:

Access the world's largest collection of social science research data here by searching across or browsing through one of the virtual data archives (called "dataverses") listed below. You may also create a dataverse of your own, backed up in perpetuity by the Henry A. Murray Archive, which may easily be customized to appear as if it is on your web page, but in fact is served by the IQSS Dataverse Network. This means that all the scholarly credit, web visibility, and access control for the data devolve to you, but all the work, preservation guarantees, and software and hardware upgrades and maintenance are taken care of by IQSS.

At time of posting it lists Dataverses: 390 | Studies: 42,018 | Files: 674,076