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Community
Liaison Council Meeting Minutes
4:00 p.m., July 15, 1999
Natcher Conference Center, Room D
Draft
WELCOME
Ms.
Hedetniemi welcomed members and guests.
HANDOUTS:
Agenda
Minutes of June CLC meeting
NIH Record
ANNOUNCEMENTS/REPORTS
Ms. Hedetniemi said there had
been a letter to the editor of the Bethesda
Gazette concerning the observance of the dog leash ordinance on parts of
the NIH campus. She will call the person who wrote the letter to explain
that NIH recognizes that some neighbors use the campus as an extension of
their grounds. She hopes to be
able to work out a solution that will allow this situation to continue
without offending anyone.
NIH and Edgewood Glenwood have
embarked on a joint project to construct and landscape a pathway on the
border between this neighborhood and NIH.
Mr. Clifford announced that
access from Old Georgetown Road to the parking garage off Center Drive is
closed, requiring traffic to use Lincoln Drive. His office is working to create solutions to any traffic
problems created by this closure. He
invited the CLC to observe the various types of crane in use on construction
sites on campus, including a “Texas Twister,” one of two in the country
and, at 100 tons, the largest hydraulic crane built.
It can be observed in use at the Vaccine Research Center.
Ms. Hedetniemi believes that some
confusion was created in the community by a recent description in the
newspaper of plans for the Adult Guest House.
This will not, in any sense, be a hotel, nor will it put NIH in the
hotel business. It will be a
place of lodging for adults, equivalent to the Children’s Inn for
children, in that it will offer adults a place where they can stay free of
charge with family members while undergoing extended or short-term treatment
at NIH. The Adult Guest House
will be supported, as is the Children’s Inn, by private donations and
volunteer assistants.
Maryland Delegate Bronrott, who
is behind the Safe Streets Initiative, has been invited to talk to the CLC
in September, as has Bonnie Fogel of Bethesda Academy of the Performing
Arts.
PRESENTATIONS:
NIH Clinical Trial Data
Base:
Ms. Robin Kawazoe, Director,
Office of Science Policy and Planning Dr. Alexa McCray, Director, Lister
Hill National Center for Biomedical Communication, National Library of
Medicine
In
introducing the program, Ms. Hedetniemi noted that the NIH Clinical Trial
Data Base (CTDB) was mandated by Congress in the FDA Modernization Act of
1997, Section 113, which required the Secretary of the Department of Health
and Human Services to work through NIH to create a national data base for
clinical trials. She asked Ms.
Kawazoe and Dr. McCray to report on the project to the CLC.
Ms. Kawazoe began by giving some background on the project, and then
Dr. McCray described progress to date on implementation.
Ms. Kawaoe
said various NIH institutes presently operate seven different data bases on
clinical trials. The aim of
Section 113 is to create a centralized, standard data base for all trials.
In addition, the law requires each trial to offer standard
information: 1) purpose of the
protocol and its sponsor; 2) eligibility requirements; 3) location; and 4) a
point of contact for more information.
Currently, Ms. Kawazoe and the
Office of Science Policy and Planning are working through the Office of the
Director to determine how to coordinate the information from NIH trials and
others nationwide. Her office
also must study how to disseminate this information to the public, to
medical practitioners, and to other institutions involved in clinical
trials. This is a complex task
that involves meeting the public’s different needs and levels of
experience. A toll-free number
for answering inquiries is being considered and may be installed within a
couple of years, when all concerns regarding its use have been addressed and
answered.
The National Library of Medicine
will be the home for the data base, and Dr. McCray’s office is currently
working on the prototype. Dr. McCray said the goal of the project is to
create one place to come for information on clinical trials. The phased
approach to developing this coordinated system will begin with the 21
institutes at the NIH and will move from NIH to other federal agencies with
trials, such as the Food and Drug Administration, the Department of Defense,
and the Department of Veteran Affairs.
The data base will contain both direct information on trials and
links to related sites.
Dr. McCray expects the first
system to be operating by the end of the year.
Public and regional medical libraries have assisted in testing the
system and in getting the word out about its operation.
Because the data base will be on the World Wide Web, it will be
readily available through the computers in use in libraries, social work
offices, and doctor’s offices.
Dr. McCray offered several
examples of how people in varying circumstances around the United States
could obtain information about trials and also about medical conditions for
which there are presently no trials but about which much could be learned
online. The aim of the data
base is to be equally accessible to members of the public with direct access
to computers and those who must rely on others for access to the system.
Dr. McCray’s examples suggested that health care professionals,
social workers, and library technicians will be encouraged to use the data
base on behalf of their clients with questions about their medical
conditions or that of their families.
Ms. Hedetniemi expressed the hope
that the prototype could be demonstrated at the Family Health Forum she is
planning for Saturday, November 6, at the Natcher Conference Center.
Ms. Miller asked whether travel funds are available to bring people
to where tests are taking place. Dr.
McCray said this would depend on who was running the trial and what funding
was available. Mr. Schofer asked whether the data base was for use in the
United States alone. Dr. McCray
said the data base was not for use in the United States only, and the
question of who could participate in the trials was addressed by individual
trial directors. Dr. Billings
asked whether those who participate in trials will have access to trial
results. Dr. McCray said that
this was one of the aims of the data base.
Ms. Des Roches asked how the 800
number will work. Dr. McCray
said the plan is for the person answering the phone to hook into the
computer to search for information for the person calling.
Because the feasibility study for how to operate the phone
information line successfully is still in progress, there are still
questions about how it will be used. Mr.
Schofer thought the data base might be so successful that there would be
competition for trials. Dr. McCray said that at this point most trials have
difficulty in recruiting candidates. Mr.
Resnik hoped the data base would help disseminate information about NIH to
the public.
Construction Updates:
Clinical Research Center and Storm Water Management Pond: Yong-Duk Chyun of the Office of Engineering Services
Mr. Chyun showed the council a
series of slides documenting work on the Clinical Research Center (CRC) to
date. This has included moving
the entrance to the south side of the building, rerouting Center Drive,
moving the west utility tunnel (80% complete), and beginning work on the CRC
building itself. The new building will include a 250-bed hospital unit and
250,000 square feet of laboratory space. At this point, 80% of the
excavation for the CRC is complete.
Mr. Chyun said soil conditions in
the CRC site require caissons to be installed in some areas, while others
require only footings. Foundation
walls are going up now, and the project should be completed in the summer of
2002.
A storm water pond will be built
at the corner of Rockville Pike and West Cedar Lane. It will be a “wet” pond with plantings around the edges
in place of fencing. Mr. Chyun showed a photo of a similar pond in a nearby
location and a drawing of the NIH pond and its surrounding planting.
Mr. Schofer asked whether the pond would create a mosquito problem.
Mr. Chuyn said the pond would be aerated to prevent mosquito production.
Ms. Hedetniemi said the pond would also support fish and snails to
keep down insects.
OCL
Web Site: Bob Gilbo, Base Ten, Inc.
Mr. Gilbo showed the new Web site
to the council, and Ms. Hedetniemi asked for suggestions.
The group suggested that What to Do and What to Use were too close in
name and should be changed to more clearly represent what is under each
title. Ms. Hedetniemi asked
whether anyone had a problem with having their names listed as council
members; no one voiced any concern about this.
She asked members to take the address of the site and examine it
fully and give her comments on their conclusions.
OCL
Newsletter
Ms. Hedetniemi said she was
planning changes in the newsletter that will involve using Palladian’s
desktop publishing capability as well as devices to highlight information
more readily. She will provide
prototypes at future meetings.
NEXT MEETING:
THE NEXT MEETING WILL BE ON
THURSDAY, SEPTEMER 16, 1999, AT 4:00 P.M. IN THE NATCHER CONFERENCE CENTER,
ROOM D.
Attendees:
Janyce Hedetniemi, OCL, NIH
Vivian Auld, National Library of Medicine
Anthony Clifford, ORS, NIH
Jeanne Billings, Wisconsin Condominium Association
Yong-Duk Chyun, ORS, DES, NIH
Robyn Des Roches, Edgewood Glenwood Association
Ina Feinberg, City Commons of Bethesda
Bob Gilbo, Base Ten, Inc.
Jeanne Goldstein, Chevy Chase Valley Citizens Association
Jack Hayes, East Bethesda Citizens Association
Carolyn Revelle Hufbauer, M-NCPPC
Robin Kawazoe, Office of Science Policy and Planning, OD
Ed Konig, East Bethesda Citizens Association
Alexa McCray, Lister Hill National Center for Biomedical Communication,
NLM
Ginny Miller, CLC Co-Chair, Wyngate Citizens Association
Morton Goldman, Luxmanor Citizens Association
Frank O'Rourke, Whitehall Condominium Association
Robert Resnik, Huntington Terrace Citizens Association
Eleanor Rice, Locust Hill Civic Association
Ralph Schofer, Maplewood Citizens Association
Stella Serras-Fiotes, Office of Research Services, NIH
Jim Ward, Ayrlawn Citizens Association
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