Breast and Colon Cancer Family Registries
About Colon CFR: Working Groups - Descriptions and Member Rosters
Behavioral
and Education Working Group (B/EWG) (member roster)
Chair: Mary Jane Esplen, R.N., Ph.D., Cancer Care Ontario
This group, which includes representatives from clinical and health psychology,
health education, clinical genetics, and genetic counseling, promotes a
standardized behavioral and social science research agenda within the Colon
CFR. To help the CFR attend to participants’ psychosocial and behavioral
needs, this Working Group develops materials, programs, protocols, and
contacts using state-of-the-art clinical, behavioral, and ethical principles
and standards. Examples of past or current research projects include:
- A counseling intervention on DNA testing decision, adherence to screening
guidelines, comprehension of CRC risk, and psychological adaptation
- Development and pilot testing of group therapy for HNPCC carriers
- Survey of communication patterns and need for assistance in cases and
family members
- Psychosocial and behavioral impact of predictive DNA testing for HNPCC
- Telephone counseling for high-risk families using tailored messages
- Evaluation of interest in and effect of providing tumor MSI results to
CFR participants
These studies will provide pilot data for additional future research.
Biospecimens and MSI Working Group (BWG) (member roster)
Chair: Teresa Selander, B.Sc., Mount Sinai Hospital
During the first year of funding, this Working Group developed standardized
protocols for biospecimen collection. In conjunction with the Informatics
Center, the Biospecimens and MSI Working Group developed a biospecimen data
dictionary and files to catalog the receipt, availability, and dispatch of
biospecimens. DNA from whole blood, blood spots, plasma sources, lymphoblastoid
cell lines, ficolled pellets, frozen cell lines, and tumor slides and blocks
are recorded and inventoried. The data dictionary also sets out requirements
for dispatching and tracking (during shipment to investigators) and provides
a uniform definition of biospecimen-related variables across the Registry.
Establishing a resource of high-quality biospecimens is a top priority for
the Colon CFR. Recognizing the importance of making extracted DNA readily
available to researchers, the consortium applied for and was awarded a supplement
to provide funding for the Registry centers that lacked funds for DNA extraction.
As a result, extracted DNA is available on all Colon CFR participants recruited
through July 2002, including probands, relatives, spouses, and other controls.
After the Colon CFR obtained supplemental funds to conduct microsatellite
instability testing on Colon CFR tumors, the Biospecimens and MSI Working
Group helped develop protocols for both MSI testing and immunohistochemistry
(IHC). These molecular tests detect loss of function in the mismatch repair
pathway.
Diet Working Group (DWG) (member roster)
Chair: Loïc Le Marchand, M.D., Ph.D., Cancer
Research Center of Hawaii, University of Hawaii
In addition to a few general questions included in the core CFR risk factors
questionnaire, four sites have collected detailed dietary data from participants
using a food frequency questionnaire. Ontario, USC and Hawaii have
used a questionnaire developed by the Multiethnic Cohort Study investigators
in Hawaii. This questionnaire was validated for five ethnic groups
living in Hawaii and California. The Hawaii group is providing nutritional
and food composition expertise. Questionnaires are scanned and food,
nutrient and supplement intake data are returned to the sites for transmission
to the Informatics Center. The Australia registry is using a questionnaire
developed for the Melbourne Cohort Study.
The Diet Working Group is composed of representatives from all registry
sites. Work to date includes the editing of the diet data using collectively
developed rules, as well as the coordination of data analyses that focus
on nutritional-related hypotheses. The first set of analyses is focusing
on differences of dietary risk factors by MSI status.
Epidemiology and Analysis Working Group (E/AWG) (member roster)
Chair: Polly A. Newcomb, Ph.D., Fred Hutchinson Cancer Research Center
The Epidemiology and Analysis Working Group developed the core questionnaire
administered to all Colon CFR participants, including cases, controls, and
affected and unaffected relatives. This Working Group also described a standardized
approach to summarizing recruitment and response rates. Members drew on their
collective expertise to develop the Colon CFR Risk Factor Questionnaire.
Because of the substantial investment and expertise in the development of
the Colon CFR Risk Factor Questionnaire, it has been made available to investigators
outside the CFR. Three centers also used a detailed diet history questionnaire.
A major strength of the Colon CFR is its large cohort of individuals at
risk for colorectal cancer and other malignancies. During
Phase II, the CFR is prospectively following all living participants (excluding
population controls) to ascertain vital status and to update information
on demographics, lifestyle factors, cancer screening and surveillance, chemoprevention,
and cancer histories. The Epidemiology and Analysis Working Group developed
a follow-up core questionnaire that collects information directly from all
registrants regarding their experience since completion of the baseline questionnaire.
The Working Group also has developed standardized forms for collecting details
about surgery, chemotherapy, and radiotherapy for all CFR probands, as well
as details about procedures pertaining to their colorectal cancer and incidence
of adenomas since baseline.
Molecular Characterization and Pathology Working Group (MC/PWG) (member roster)
Chair: Graham Casey, Ph.D., Cleveland Clinic/University of Southern California
Consortium
In Phase I of the Colon CFR, the Molecular Characterization Working Group
developed a molecular characterization component of the CFR to examine the
interrelationship between germline mutations in mismatch repair genes, microsatellite
instability in tumors, and family history of neoplasia. Also during the first
phase, the Pathology Working Group developed the pathology data dictionary,
which defines the core pathology variables for the study, most of which are
abstracted from the pathology records of Colon CFR registrants. In addition,
the Pathology Working Group worked with the Biospecimens Working Group to
establish protocols for obtaining and processing tumor blocks and for MSI
testing and immunohistochemical staining. At the start of the MSI study,
in 1999, the Pathology Working Group was combined with the Molecular Characterization
Working Group.
The Molecular Characterization and Pathology Working Group provide feedback
to the Steering and Advisory Committees regarding proposed Colon CFR projects
that involve molecular studies. The group also promotes projects involving
molecular research both within the Colon CFR and with outside investigators.
Publications Working Group (PWG) (member roster)
Chair: John L. Hopper, Ph.D., The University of Melbourne
This Working Group reviews all manuscripts derived from Colon CFR data to
insure complete and accurate description of the CFR data set, to insure appropriate
acknowledgment of the NIH funding, to provide scientific review to the authors,
and to resolve any issues related to authorship.
Technical (Informatics)
Working Group (member
roster)
Chair: Diglio Simoni, Ph.D., Research Triangle Institute
The Technical Working Group is composed of programmers and data managers
from each CFR site and the Informatics Center. The group develops
information technology standards that enable the transfer of data to the
Informatics Center and the assimilation of data into a single database.
Standards include data dictionaries, data transfer protocols, and quality
control mechanisms.
Treatment
and Survival Working Group (T/FUWG) (member roster)
Chair: Steven Gallinger, M.D., Cancer Care Ontario
Representatives from each Colon CFR center, along with additional SEER
personnel, developed a standard form for collecting clinical follow-up
and treatment information. To better understand what genetic factors, environmental
factors, and treatment interventions influence clinical outcomes, meticulous
and standardized collection of treatment and clinical responses is needed.
Collection of this data is being conducted in some sites and piloted in
others, hampered by funds to support this activity presently. In addition,
this Working Group works closely with the Epidemiology and Analysis Working
Group to ensure uniform updates of probands’ clinical status (e.g.,
sites and patterns of disease recurrence, development of metachronous polyps/cancers)
and routine follow-up of family history. This Working Group has developed
a clinical research agenda.
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