Eliminating Disparities in Clinical Trials (EDICT):
Formulating Policies
National Roundtable Meeting
The Chronic Disease Prevention and Control Research Center
(CDPCRC) at Baylor College of Medicine in Houston and the Intercultural Cancer
Council (ICC) have launched the EDICT (Eliminating Disparities in Clinical
Trials) Initiative, a four-year research program funded by Genentech, Inc. to
address the problems and solutions related to improving participation of
minority and underrepresented populations in clinical trials.
EDICT Roundtable
Under the aegis of the EDICT Initiative, on September 6-8,
2006, Baylor College of Medicine and the ICC held a national roundtable meeting
to create policy strategies to impact the three R's of clinical trial
participation: 1) recruitment, 2) retention, and 3) return (post-trial benefit)
for minority and underserved patients. The roundtable was attended by over 150
public health officials, medical researchers, professional organizations,
clinicians, pharmaceutical and health care companies, and patient advocates in
the areas of oncology and asthma clinical trials - two categories where
minority and underserved populations suffer disproportionately from the burden
of disease.
Policy Strategies Are Currently Being Developed
Policy suggestions generated at the meeting are currently
being reviewed and synthesized. Tapes from the meeting are being transcribed to
ensure all participants' contributions are documented from the meeting-wide
discussions.
Listed below are the major issue areas into which policy
suggestions were categorized:
- Education/Training of Healthcare Professionals
- Regulatory Oversight & Enforcement
- Allocation of Research Funding Proportionate to Disease
Burden
- Assuring Healthcare Coverage in Clinical Trials
- Providing Incentives to Pharmaceutical Industry
- Publication-Related Policies
- Fostering Community Involvement, Relationships &
Education
- Patient Navigation
- Recognition Program
- Technology/Electronic Medical Records
Next Steps: "Opportunity
Teams" To Continue in Each Issues Area
Next steps will include further work on these policy areas
listed above by participants who expressed an interest at the
meeting. If any other individuals would like to participate in one
or more of the groups above, please contact the EDICT project staff.
Postings on the EDICT Website (www.bcm.edu/edict)
Additional meeting information may be found on the EDICT
website including the EDICT Reading Room with strategies, thought pieces,
personal essays and opinion articles to acquaint the reader with issues
and tactics for eliminating disparities in clinical trials. This website will
be continuously updated as new information and contributions are received.
For More Information, Please Contact: Armin D. Weinberg, PhD, Principal Investigator, EDICT at Baylor College
of Medicine, 1709 Dryden, Suite
10.25, Houston,
TX 77030,
Phone: 713.798.4614, Fax: 713.798.3990 or email: cdrc@bcm.edu.
Thanks to Cynthia Spiker of the CDPCRC for contributing this
article.
Research Advocates Are Invited To Web Briefing on the FDA Draft
Guidance on Laboratory Developed
Tests
The Food & Drug Administration (FDA) has recently
developed draft guidance on the potential regulation and oversight of complex
genetic and genomic tests. The Research Advocacy Network is presenting a webconference on November 2, 2006 2pm ET to brief the research
advocacy
community while this guidance document is in public comment period.
RAN also developed a document to
highlight the patient perspective on this issue. Click here to download ›Patient
Considerations.
The speakers will be:
- Steven I. Gutman, MD, Director, Office of In Vitro Diagnostic (OIVD)
Device
Evaluation and Safety, Center for Devices and Radiological Health, will speak for the Food
and Drug Administration Office of In Vitro Diagnostic Device Evaluation
and Safety
- Paul Radensky, MD, JD, Partner, McDermott, Will and Emery will give
the Legal & Industry Perspective
- Bob Erwin - Patient Advocate, Founder and President, Marti Nelson Cancer
Foundation will present thoughts on "What this means for patients and
advocates?"
To register for the webconference send an email to info@researchadvocacy.org with your
name and email address. There is no
charge but we do need your registration information. The one hour session will also be archived
and available for playback 36 hours following the live session.
Congratulations to the Inflammatory Breast Cancer (IBC) Research
Foundation
The IBC Research Foundation has been awarded one of seven
Best Practices In Breast Cancer Advocacy Awards through the National Breast
Cancer Coalition Fund. Research Advocacy
Network was happy to support this effort and we congratulate the ibcRF. For the ibcRF
specific press release go to: www.ibcresearch.org/biobank/bestpracticespressrelease.pdf. For the
National Breast Cancer Coalition Fund general press release about all the
recipients, go to: http://www.stopbreastcancer.org/bin/index.asp?strid=876&btnid=2&depid=20.
Research
Advocacy
Network Activities
- Oct 15 -16 - Breast Cancer Research Consortium
- Oct 18 - Indiana
Cancer Consortium
- Nov 3 - 5 - Eastern Cooperative Oncology Group (ECOG)
Meeting
- Nov 7 -8 - Summit on Cancer Clinical Trials
- Nov 14 - PRIM&R Community Member Training
- Nov 15- 17 PRIM&R Annual Meeting
- Nov 28 - 29 caBIG Data Sharing and Intellectual Capital
Meeting
- Dec 14-17 San Antonio Breast Cancer Symposium
Coming in the next issue of Network News:
Report from the St.
Louis Komen Affiliate Research Advocacy Workshop,
October 20, 21 and the National Lymphedema Network Lymph Science Advocacy
Program Lecture Series.
We need your help! Your Donation Makes a Difference!
If you believe in the hope of research and the power of advocacy, you can help
the Research Advocacy Network by sending a donation. RAN is an exempt 501 c 3
organization and dependent on your support to keep going.
PLEASE NOTE: Our new mailing
address is: 6505 W. Park Blvd,
Suite 306, PMB 200, Plano, TX 75093.
Thanks!
Research
Advocacy Network Welcomes
New Members!!! Thanks to all of you who have recently joined the Network.
For those that have not yet please go to http://www.researchadvocacy.org/
and click on "Join" There are no dues for Network membership and this
will assure that you receive all notices and have access to Network programs.
Editor: Elda
Railey
Network News is currently published 10 times per year and
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