Dear Just Ask:

From time to time I receive requests for information from individuals on the outside about ongoing treatment protocols here at NIH. Is there any single source of information I can query about such protocols, or does each institute deal with these through an information officer? Thanks.

In answering this question, I must point out I am not an expert on this subject, but I do have a good sense of where most major NIH online resources reside. Here's what I know about online information for clinical studies.

The best source of in-house data on clinical studies can be found at the Clinical Center's Web site at

This online database can be queried in several ways and provides details on each protocol, including a summary, the sponsoring institute, recruitment details, and population exclusions. According to Jerry King, who heads the CC medical record department, each principal investigator chooses whether to be included in the database. He estimates the database encompasses about 78 percent of the intramural studies. If you have questions about this resource, I suggest you contact Sara Byars, deputy chief, Office of Clinical Center Communications (594-5788).

Several ICDs also use their own Web sites to carry information on their own intramural clinical studies however, these resources appear to be subsets of the data found in the CC database.

There are other online databases of NIH-supported clinical studies that also include extramural trials. If you search one of these resources, I would imagine it would be relatively easy to sort your results to show only those studies that are being conducted here at the Bethesda campus.

First, we have NCI's PDQ:

Here's how this information resource is described:

"PDQ contains the world's most comprehensive cancer clinical trial registry--more than 1,600 summaries of trials that are open or approved for patient accrual, including protocols for cancer treatment, supportive care, screening and prevention. In addition, you can reference more than 8,000 summaries of protocols that have been completed or are no longer accepting patients."

"For each trial, detailed summaries are prepared from the original protocol document, ensuring uniformity and accuracy of the content. You can retrieve protocols by diagnosis, treatment modality, phase, locality or drug name, or a combination of these parameters."

"All protocols supported by the NCI are listed in PDQ. Clinical trials not sponsored by the NCI, including foreign protocols, are included in PDQ after review and approval by the PDQ Voluntary Protocol Review Board."

Another place to look is the NIH Office of Rare Diseases, which describes its clinical trials database in these words:

The NIH Office of Rare Diseases has developed a clinical research database to assist researchers and the public in identifying ongoing or planned clinical research projects related to rare diseases or conditions. The Rare Diseases Clinical Research Database (RDCRD) is located at

"The purpose of the database is to match potential research participants with current clinical research projects supported by NIH by making information about rare disease clinical research studies available to the rare disease community. The database also provides a directory of information on voluntary organizations and support groups."

"The Rare Diseases Clinical Research Database contains protocol summaries of clinical studies currently accruing patients. Each protocol summary includes the study objectives, patient entry criteria, and the details of the treatment regimen. Also included in the database are the names of the research investigators and the geographical locations of the studies. The RDCRD contains names, addresses, telephone numbers, and voluntary patient support organizations that provide information concerning rare diseases."

For more information about the RDCRD, contact Steve Groft at 402-4336 or e-mail

The Office of Rare Diseases page also provides some tips on searching for information on clinical studies. For example, it points out that you can use the NIH CRISP Database to try to identify studies using search terms such as "clinical trials" or "clinical studies." CRISP is located at

You can find information about AIDS Clinical Trials at the National Library of Medicine. Go to

Finally, you may want to note that NIH is exploring the creation of a trans-institute database that would provide information on all NIH-sponsored clinical studies however, this initiative is in an early stage of development.

Hope this helps.

Dennis Rodrigues
Office of Communications

Interest Group Gazette The Mitochondria Interest Group (MIG) and NCI's Laboratory of Cell Biology are hosting a lecture on "Cytochrome oxidase in neuronal metabolism and Alzheimer's disease," by Francisco Gonzalez-Lima, of the University of Texas at Austin. The meeting will be held February 5 at 3:00 p.m. in Wilson Hall (Building 1) and teleconferenced to NIEHS in North Carolina and NIA in Baltimore. (The videotape will be archived on the MIG web site <http://www-lecb.ncifcrf.gov/~zullo/migDB/>

Flash: This will be the first MIG meeting with CME credit available CME credit can also be obtained for all subsequent 1998 MIG meetings, as well as and the first (and the second, if it falls before February 6) in 1999. For information, contact Steve Zullo at 435-3576 or zullo@helix.nih.gov. The Cytokine Interest Group has a new co-chair: Warren Leonard has replaced Howard Young Sharon Wahl continues as the other co-chair.

Return to the Table of Contents