Research Registries


What is a research registry?

A research registry is a system for collecting information on specific research studies and maintaining it in a structured record, often in a database. Many registries consist primarily of basic information such as abstracts, while others are more comprehensive and consist of information on research questions or objectives, research designs (e.g., randomized trials), sample selection criteria, funding (e.g., NIDRR), research study status, results, and/or research volunteer opportunities. Research registries vary in disciplinary focus and are increasing in popularity and use for consumers and providers in domains such as medicine, rehabilitation, dentistry, nursing, and education. Registries are also an important resource for conducting systematic reviews and identifying evidence-based research for training or other forms of decision-making support.

Why are registries beneficial?

Registries can provide researchers, consumers, and/or practitioners with powerful search engines for finding answers to questions in a format customized to the users' needs. Registries are also important in the knowledge translation (KT) process. KT pertains to the collection, quality assessment, and utilization of evidence-based knowledge. Registries can be used to support KT because they represent a coherent strategy for keeping up to date, assessing, and managing the increasing volume and frequently conflicting scientific information and data produced by researchers.

Which registries are relevant to disability and rehabilitation research?

Registries vary in content or focus area. For example, the Cochrane Collaboration sponsors registries of systematic reviews in the health and function areas. Occupational Therapy (OT)-Seeker is a registry that focuses on occupational therapy research studies. This document describes a collection of registries that focus on disability and rehabilitation related research; health and function research; and systematic reviews of research.

Selected Registries

Disability and Rehabilitation Research

Health Services Research Projects in Progress (HSRProj)
http://www.nlm.nih.gov/hsrproj
HSRProj consists of public health and health services research studies that are ongoing or have been completed within the 6 months prior to the date the project appears in the database. HSRProj is sponsored by the National Information Center on Health Services Research and Health Care Technology (NICHSR).

Occupational Therapy (OT) Seeker
http://www.otseeker.com
OT Seeker is a database of abstracts of systematic reviews and randomized controlled trials relevant to occupational therapy. To be included, studies must involve the comparison of at least two interventions (either two interventions or one intervention and one no treatment/sham treatment control). Crossover trials (where each participant receives more than one intervention) can be included if other criteria are met. Unlike HSRProj, this registry focuses on completed research studies. Other inclusion criteria for this registry pertain to randomization and intervention design. These additional criteria can be reviewed at the OT Seeker Web site.

Physiotherapy Evidence Database (PEDro)
http://www.pedro.fhs.usyd.edu.au/index.html
PEDro consists of abstracts of randomized controlled trials, systematic reviews, and evidence-based clinical practice guidelines in physical therapy. PEDro intervention studies include, but are not limited to, treatments, prevention strategies, diagnostic tests or techniques, or management or education strategies. Additional inclusion criteria are included on the Web site.

Psychological Database for Brain Impairment Treatment Efficacy (PsycBITE)
http://www.psycbite.com
PsycBITE is a database of cognitive, behavioral, and other treatments for psychological problems and issues occurring as a consequence of acquired brain impairment (ABI). PsycBITE includes published reports meeting five selection criteria that provide empirical data on the effectiveness of one or more interventions. PsycBITE studies include systematic reviews, randomized controlled trials, non-randomized controlled trials, non-randomized controlled trials group comparisons, case series, and single-subject designs. PsychBITE studies are rated for their methodological quality and evaluated according to various aspects of scientific rigor.

Health and Function Research

AIDSInfo - Clinical Trials
http://aidsinfo.nih.gov/ClinicalTrials/Default.aspx?MenuItem=ClinicalTrials
Clinical trials are research studies designed to answer specific questions about the safety and/or effectiveness of drugs, vaccines, other therapies, or new ways of using existing treatments. AIDSInfo is designed to help individuals locate trials studying HIV/AIDS.

Allied and Complementary Medicine Database (AMED)
http://www.ovid.com/site/products/ovidguide/ameddb.htm
AMED is a database produced by the Health Care Information Service of the British Library. It covers a selection of journals in complementary medicine, palliative care, and several professions allied to medicine. Published by Ovid, AMED covers complementary or alternative medicine as well as physiotherapy, rehabilitation, acupuncture and occupational therapy. It is available online and on CD-ROM.

Australian Clinical Trials Registry (ACTR)
http://www.anzctr.org.au
The Australian New Zealand Clinical Trials Registry has been established at the NHMRC Clinical Trials Centre, University of Sydney, with funding from the Australian National Health and Medical Research Council (NHMRC) and New Zealand Health Research Council.

CenterWatch Clinical Trials Listing Service
http://www.centerwatch.com
Listings of active industry and government-sponsored clinical trials, as well as new drug therapies in research and those recently approved by the FDA.

ClinicalTrials.gov
http://clinicaltrials.gov
ClinicalTrials.gov is a registry of federally and privately supported clinical research that involves human volunteers. The International Committee of Medical Journal Editors (ICMJE) initiative has identified this as the registry where trials must be registered to qualify for publication in any of the journals that adhere to the Uniform Requirements for Manuscripts Submitted to Biomedical Journals. All entries in ClincialTrials.gov must be approved by a human subject review board (or equivalent) and conform to the regulations of the appropriate national health authorities.

CRD Ongoing Reviews Database
http://www.york.ac.uk/inst/crd/projects/register.htm
A register of systematic reviews of health care effectiveness from the Centre for Reviews and Dissemination. It is intended to include systematic reviews carried out and/or commissioned both within and outside of the NHS.

NIH Research Portfolio Online Reporting Tool (http://report.nih.gov), a new gateway to NIH reports and other information resources.

Current Controlled Trials, Ltd.
http://www.controlled-trials.com
Information about international randomized controlled trials; from the Current Science Group of biomedical publishing companies.

MEDLINE
http://www.nlm.nih.gov/pubs/factsheets/medline.html
MEDLINE is the U.S. National Library of Medicine's premier bibliographic database that contains references to journal articles in the life sciences with a concentration on biomedicine. Records are indexed with NLM's Medical Subject Headings (MeSH).

National Library of Medicine (NLM) Gateway
http://gateway.nlm.nih.gov
Gateway is "One-stop shopping"for an increasing number of the information resources of the NLM. It is targeted to the Internet user who comes to NLM not knowing exactly what is here, or how best to search for it.

NIH Clinical Center
http://clinicalstudies.info.nih.gov
Intute is a free online service providing Web resources for education and research on topics of health and medicine. The service is created by a network of UK universities and partners. The resource is aimed at students, researchers, academics and practitioners.

PDQ Clinical Trials Database
http://www.cancer.gov/cancertopics/pdq/cancerdatabase#clinical_trial
A database of the National Cancer Institute, PDQ (Physician Data Query) includes active and closed trials.

PubMed
http://www.pubmed.gov
PubMed is a service of the U.S. National Library of Medicine that includes over 17 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s.

UK Clinical Research Network (UKCRN)
The UKCRN Portfolio search tool allows users to search for studies in a number of ways including searching by Chief Investigator, Study Title and UKCRN Study ID number. The UK Clinical Research Network was established to support clinical research and to facilitate the conduct of trials and other well-designed studies across the UK.
http://www.ukcrn.org.uk/index/clinical/portfolio_new/P_search.html

Systematic Reviews of Research

Campbell Collaboration Library
http://www.campbellcollaboration.org/library.php
An international non-profit organization that aims to help people make well-informed decisions about the effects of interventions in the social, behavioral and educational arenas.

Centre for Reviews and Dissemination (CRD)
http://www.york.ac.uk/inst/crd
The CRD aims to provide research-based information about the effects of interventions used in health and social care. The CRD produces systematic reviews that cover the effects of health and social care interventions relevant to the NHS. The CRD receives core funding from the United Kingdom's Department of Health NHS Research and Development Programme.

The Cochrane Library
http://www.thecochranelibrary.com
(Subscription available from John Wiley & Sons Inc. Free access for NIDRR-funded grantees: http://www.ncddr.org/cochrane/index.html)

A product of the Cochrane Collaboration, http://www.cochrane.org, an international not-for-profit and independent organization, dedicated to making up-to-date, accurate information about the effects of healthcare readily available worldwide. It produces and disseminates systematic reviews of healthcare interventions and promotes the search for evidence in the form of clinical trials and other studies of interventions. Free summaries are available on the Cochrane Collaboration Web site: http://www.cochrane.org/reviews

The Cochrane Library is a collection of databases that contain high-quality, independent evidence to inform healthcare decision-making. It includes reliable evidence from Cochrane and other systematic reviews, clinical trials, and more.

  • Cochrane Database of Systematic Reviews (CDSR): Cochrane reviews provide the combined results of the world's best medical research studies, and are recognized as the gold standard in evidence-based health care. Cochrane reviews are based on the best available information about healthcare interventions. Currently, 51 review groups from "Acute Respiratory Infections" to "Wounds," produce systematic reviews for The Cochrane Library. In 2007, over 4,500 reviews appear in the CDSR.
  • Database of Abstracts of Reviews of Effects (DARE): Contains abstracts of systematic reviews that have been quality-assessed. Each abstract includes a summary of the review together with a critical commentary about the overall quality.
  • Cochrane Central Register of Controlled Trials (CENTRAL): CENTRAL includes details of published articles taken from bibliographic databases (notably MEDLINE and EMBASE), and other published and unpublished sources. CENTRAL records include the title of the article, information on where it was published (bibliographic details) and, in many cases, a summary of the article.
  • Cochrane Database of Methodology Reviews: The CDMR contains two types of document: Cochrane methods reviews and protocols. Methods reviews are full-text systematic reviews of methodological studies. Beginning in 2006, Methods Reviews are included in the browse lists for Cochrane Reviews, although they retain their own 'tab' in the search results.
  • The Cochrane Methodology Register: A bibliography of publications which report on methods used in the conduct of controlled trials.
  • Health Technology Assessment Database: The HTA database brings together details of completed and ongoing health technology assessments (studies of the medical, social, ethical and economic implications of healthcare interventions) from around the world.
  • NHS Economic Evaluation Database: The NHS EED database assists decision-makers by systematically identifying economic evaluations from around the world, appraising their quality and highlighting their relative strengths and weaknesses.

EPPI-Centre
http://eppi.ioe.ac.uk/cms
The Evidence for Policy and Practice Information and Co-ordinating (EPPI) Centre provides a systematic approach to the organization and review of evidence-based work on social interventions; from the Social Science Research Unit, Institute of Education, University of London.

Institute for Work and Health
http://www.iwh.on.ca/index.php
IWH is funded by Workplace Safety & Insurance Board of Ontario to conduct multidisciplinary systematic reviews on topics in workplace injury prevention. IWH's mission is to provide evidence-based products to inform and assist clinicians, researchers, policy-makers, employers, labour and workers. IWH's Systematic Review Program involves reviewing international research literature on important work-and-health topics to determine "best evidence."

What Works Clearinghouse (WWC)
http://ies.ed.gov/ncee/wwc
The WWC aims to promote informed education decision making through a set of easily accessible databases and user-friendly reports that provide education consumers with high-quality reviews of the effectiveness of replicable educational interventions (programs, products, practices, and policies) that intend to improve student outcomes. The WWC was established in 2002 by the U.S. Department of Education's Institute of Education Sciences (IES) to provide educators, policymakers, researchers, and the public with a central and trusted source of scientific evidence for what works in education.