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A comprehensive list of Web sites that contain trial and registry information for both professionals and potential participants
There is a wealth of information online regarding clinical trials. This Internet Resources section is designed to assist our readers in becoming more informed clinical trial professionals. The following Web sites are focused on the professional and/or potential participant. Please note that many pharmaceutical companies currently running trials offer access to them through their own Web sites. In addition, many patient advocacy groups and disease-specific organizations may have listings for current clinical trials specific to a medical condition on their home pages on the Web.—The Editors
The Adult AIDS Clinical Trials Group (AACTG)
Featuring occasional news regarding AIDS trials and listings of trials according to location, state, type of trial, and eligibility requirements. AACTG is funded by the Department of Health and Human Services, the National Institutes of Health, and the National Institute of Allergy and Infectious Diseases.
Australian Clinical Trials Registry
A work in progress, the Australian Clinical Trials Registry is developing an online register of all trials being conducted across the country. Here researchers can register their clinical trial for free and patients can access information about ongoing trials related to their condition at no charge. This site, funded by the Australian government through a National Health and Medical Research Council (NHMRC) Enabling Grant, will be fully operational by 2008.
The Body: HIV Open Clinical Trials
A Web site listing open clinical trials inside and outside the United States that are related to HIV and AIDS. It also has resources related to HIV health, recent diagnosis, and other topics.
Viewed by over 250,000 people every month, this popular site is managed by the oncology research center Cancer Consultants.com Inc. and provides numerous resources, including a drug and cancer dictionary, a section for newly diagnosed cancer patients, a free newsletter (SURVIVE), coverage of major medical meetings, and access to clinical trials searchable by cancer type and U.S. location. The site can also be viewed in Spanish and is endorsed by the Oncology Nursing Society.
Resource-rich Web site offering cancer-related information for professionals and patients. Features comprehensive coverage of over 20 cancer types, access to medical reference texts, live and archived Webcasts, continuing education accreditation, multimedia clips, a dose calculator for physicians, online medical journals, a clinical trials search engine, practice guidelines, and disease-specific moderated message boards. Free registration is required to access portions of the Web site.
A free information service sponsored by Cancer Research UK that provides information on cancer treatments and research along with a search engine that allows users to search clinical trials by type of cancer, trial name, or drug. This well-designed site also features a recommended reading list for over 30 different types of cancers and an impressive index of related links.
Center for Clinical Trials and Medical Device Evaluation
The Web site of the Center for Clinical Trials and Medical Device Evaluation (CCTMDE) of the University of Rochester's School of Nursing, a research and tertiary care system that encompasses both rural and population-dense service areas.
CenterWatch Clinical Trials Listing Service
Thomson CenterWatch lists over 41,000 active trials run by both industry and government. Searchable by disease, state, or keyword, the site is designed for easy access by both patients and industry.
A recruiter site where patients register and receive e-mails listing ongoing studies that match their pathogen and geographic needs. Clinical Connection sends medical information to clinics, but never contact information.
This longtime National Institutes of Health (NIH) database lists many of the Institutes funded clinical trials and has a wealth of search options, including location, disease, treatment type, and age group. There is a particular focus on AIDS and cancer trials.
A Web site containing descriptions of CMR International's clinical and R&D performance metrics programs. It also lists upcoming workshops, R&D news, a catalog of CMR publications, and links to other products.
Comprehensive NeuroScience, Inc., Clinical Trials
Comprehensive NeuroScience, Inc.—a company that provides products and services for efficiencies of knowledge development and clinical care in neuro-psychopharmacology and related areas—offers listings of their Phase I–IV clinical trials on the central nervous system, women's health, endocrinology, pain management, and other areas.
Current Controlled Trials
A pair of registries—the metaRegister of Controlled Trials and the International Standard Randomised Controlled Trial Number Register—that used to publish trial information for free but now charge a registration fee. A search on the day we visited brought up a list of 2,829 trials worldwide, from Malawi to Sweden. It's published by the Current Science Group, parent company of BioMed Central, a publisher of over 100 medical journals using the novel business model of charging authors for editing and peer review.
Directory of Clinical Databases (UK)
An information resource for those involved in clinical audit, clinical governance, health services management, health services research, research funding, and academic publishing. DoCDat uniquely enables users to find out whether a database exists that's suitable to their variables. Search using a number of criteria, ranging from type of patient (condition or treatment) to geographical area covered (within Europe, Ireland, and the UK only).
The Diseases Database
This site provides a cross-referenced, medical textbook-like index and search portal covering areas such as internal medical disorders, disease symptoms and signs, congenital and inherited disorders, infectious diseases and organisms, drugs and medications, investigation abnormalities, and more.
Focusing on cancer trials, the site compares patient profile questionnaires to a list of recruitment trials to find a successful match. All profiles are confidential.
FDA's Guidance for Industry Information Program on Clinical Trials for Serious or Life-Threatening Diseases and Conditions
This FDA document delineates statutory and procedural steps to assist sponsors who will be submitting information to the Clinical Trials Data Bank (clinicaltrials.gov).
Based in Birmingham, Alabama, this nonprofit organization is dedicated to giving clinical research patients the ability to participate in far-off trials via philanthropic flights.
Journal of Gene Medicine
A searchable database of gene therapy clinical trials across the globe. Includes charts and tables of applicable data types, such as vectors used, indications addressed, and gene types transferred, in ongoing and completed clinical trials.
MedlinePlus, a service of the U.S. National Library of Medicine and the National Institutes of Health, presents an assortment of health-related topics at this site, including drug-specific information and searchable provider directories (e.g., AMA's Physician Select). The clinical trial page deals specifically with up-to-date news on clinical trials as well as relevant information on organizations, laws, and statistics.
National Cancer Institute
This search site, run by the National Institutes of Health, allows users to find trials by stage/subtype of cancer and type of trial (i.e., prevention, diagnostic, or genetic). It also takes travel into consideration, allowing a distance search by zip code and the option to choose trials from 20 to 500 miles away.
National Institute of Allergy and Infectious Diseases
This user-friendly site lists trials being conducted by the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health Clinical Center in Bethesda, MD, and nationwide. Many of the trials listed focus primarily on HIV research.
National Institute for Health and Clinical Excellence (UK)
The National Institute for Health and Clinical Excellence (NICE) Web site provides guidance—developed using the expertise of the UK's National Health Service and health care community—on the use of new and existing medicines and treatments, the appropriate treatment and care of people with specific diseases and conditions, and whether procedures used for diagnosis or treatment are safe enough and work well for routine use. While aimed at the UK health care consumer, the site also attempts to cover sources from the rest of Europe as well as the United States. It features a "Suggest a Topic" section, which allows users to have a say in future content.
National Institute of Mental Health (NIMH)
The site lists clinical trials for studies on mental health and disorders currently recruiting new patients. There are also links to the latest NIMH news and useful resources for researchers, such as limited access data sets from NIMH-supported clinical trials.
National Research Register (UK)
This National Research Register (NRR) of the UK's National Health Service offers an interface for searching the UK Medical Research Council's clinical trials directory plus six other databases of health-related research records. There are contributions from over 350 different organizations.
Office of Rare Diseases (ORD)
Part of the goal of ORD is to stimulate and coordinate research on rare diseases and to support research that responds to the needs of patients who have one of more than 6,000 rare diseases known today. Their Web site offers databases on completed, current, or planned rare disease studies. There is also information on rare diseases plus links to patient support groups, genetic testing laboratories, and clinics.
Parish Nursing Health Information Resources
Provides links to resources that can assist the public in locating clinical trials for particular diseases or conditions, as well as links to similar portals.
Partners Healthcare System
The Web site of the Partners Healthcare System Institutional Review Board—which approves all human-subject research conducted by Partners-affiliated investigators—offering consent and expedited review forms, guidance and assurance documents, information for the public, and lots more. There's a link to an HIPAA page that includes policy and training information as well as newsletters that explain HIPAA and the "Privacy Rule."
Pediatric AIDS Clinical Trials Group (PACTG)
Run by the Division of AIDS of the NIH's National Institute of Allergy and Infectious Diseases and the National Institute for Child Health and Human Development, PACTG evaluates treatments for children and adolescents with HIV and works on interruptions for mother-to-child transmission.
Pharmaceutical Research and Manufacturers of America (PhRMA)
PhRMA created this site to communicate with patients about new medicines in development and other pharma-related issues. Includes a link to the Web site of the Partnership for Prescription Assistance (PPARx.org), where qualifying patients who lack prescription coverage can get matched to public or private programs that may provide the medicines they need at a reduced cost.
PhRMA Clinical Study Results Database
A Web-based repository of results from trials (both published and unpublished) of 26 different pharmaceutical companies, including Merck, AstraZeneca, Novartis, and Bristol-Myers Squibb. Part of a drive to make clinical trial results for pharmaceuticals marketed in the United States more transparent. Despite a slow start, the database is growing, as more companies are voluntarily submitting information.
Physician Data Query (PDQ)
The National Cancer Institute maintains their PDQ cancer database on this site. This comprehensive resource contains peer-reviewed summaries (updated monthly by six editorial boards) on cancer treatment, screening, prevention, genetics, supportive care, and complementary and alternative medicine. It also features a registry of approximately 2,000 open and 13,000 closed cancer clinical trials from around the world and directories of physicians and other professionals who provide genetics services and cancer care.
A well-organized site that provides extensive searching capabilities where users can query the PsiTri database freely for published and unpublished mental health clinical trials. Breaks down closed trials by name, year, country of origin, mental health condition, and intervention and also provides trial references. The site is developed and maintained by The National Research and Development Centre for Welfare and Health (STAKES).
Home of the PubMed journal literature search system via Entrez, a life sciences search engine developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM). This page includes over 15 million citations from MEDLINE and other life science journals for biomedical articles that date back to the 1950s. PubMed includes links to full text articles and other related resources.
Sponsored by the Kessler Medical Rehabilitation Research and Education Corporation (KMRREC), a New Jersey—based nonprofit medical research organization, the site features the latest U.S. clinical trials in rehabilitation research. In addition to a free newsletter, RehabTrials.org also features a reading list of recommended literature on Multiple Sclerosis and stroke rehabilitation.
Specialized Information Services (SIS)
Part of the National Library of Medicine and the National Institutes of Health, SIS gives users access to databases on toxicology, chemistry, HIV/AIDS, and other specialized topics. It also includes a searchable directory, DIRLINE, of health organizations.
Trials Central provides easy, free, and confidential access to listings of clinical trials. Users can search by condition (e.g., diabetes, cancer, HIV, etc.) or by type of organization (e.g., hospital, nonprofit, or government). There are also links to other health care information sites, including medical dictionaries and published articles.
A search engine with a focus on medical articles and related resources. Users can search categories of available information (e.g., guidelines, medical images, and eTextbooks) or they can query for relevant, specialist-prepared answers to their clinical questions. Nonsubscribers are currently restricted to five free searches per week.
U.S. Military HIV Research Program
A program that started in 1985 to protect American troops from HIV exposure in posts around the world. The Web site is a joint project of the Army, Navy, Air Force, Walter Reed Army Institute of Research, and the Henry M. Jackson Foundation for the Advancement of Military Medicine.
Veritas' personalized trial notification service collects confidential data on patients seeking trials and contacts both physician and patient when a match has been found.
WHO Health Metrics Network
This site is run by the WHO's Health Metrics Network (HMN), whose mission is to strengthen individual country health information systems and generate sound data for decision making at country and global levels. The searchable database contains information related to surveys, vital registration, surveillance, routine HIS, and population health research–related activities carried out in countries from 1994 to the present.
WHO International CT Registry Platform
The WHO's International Clinical Trial Registry Platform (ICTRP) is a global project to facilitate access to information about controlled trials and their results. The site also contains background information and news.
WHO Research Tools
This site offers links to many valuable WHO resources, including the WHO library database (WHOLIS), which indexes all WHO publications since 1948 and articles from WHO-produced journals and technical documents since 1985, the WHO Statistical Information System (WHOSIS), and the the WHO Communicable Disease Global Atlas. Of note are the multimedia resources (i.e., photos, audio clips, and animation) that pertain to important worldwide health topics. There are also a number of links to other centers of information.
World Health Survey
Run by Online Data Services Ltd., this site matches patients with over 12,000 trials. A survey collects information about "the health, fitness and prescription drug use of the world's population" and is used to help health professionals and pharmaceutical companies evaluate and "improve their products and services."
Pharmaceutical Company Trial Registries