I was diagnosed with thyroid cancer in Nov., 1999. Surgery and radioactive iodine followed. In Dec., 2006, I found a lump in my neck that turned cancerous. Shortly thereafter, it was found to have metastasized throughout my body and to be untreatable and inoperable. I started a clinical trial with Sutent (sunitinib) since Apr., 2007.
In Nov., 2013, the tumors began growing again and I was removed from the Sutent Clinical Trial. I started a clinical trial taking of CEDIRANIB on 04/09/14.
Wednesday, February 25, 2015
Thyroid Cancer Care Collaborative offers paradigm to improve disease management, research
A comprehensive Web-based program
developed by the Thyroid Head and Neck Cancer Foundation, in conjunction
with a multidisciplinary forum of nationally-recognized thought leaders
in thyroid cancer management, could significantly improve delivery of
patient care and benefit clinicians and researchers, according to
research published in Thyroid.
The Thyroid Cancer Care Collaborative (TCCC),
which reports and stores all data related to individual patients’
thyroid cancer care, could represent a new paradigm for database
research in thyroid cancer to improve clinicians’ understanding of managing the disease.
“Databases have provided valuable information
about large groups of patients in the study of thyroid cancer, but
research using current databases have significant limitations,” Saral Mehra, MD, MBA, of the head and neck program, section of otolaryngology, Yale School of Medicine, told Endocrine Today.
“Aside from various time-saving quality improvement and educational
services, the TCCC database feature has the potential to become an
extremely powerful research tool to answer questions about thyroid
cancer care that current databases simply cannot.”
Shortcomings among current registries
Recognizing the many unknowns surrounding
optimal treatment and surveillance recommendations for differentiated
thyroid cancer, Mehra and colleagues from other institutions undertook a
review of health registries used for cancer research in the United
States, concentrating on advantages and disadvantages relative to the
study of thyroid disease.
Population-based cancer registries, health
systems-based cancer registries and patient-based disease registries
were included in the analysis.
“We wanted to critically analyze databases
currently used in thyroid cancer research to educate practitioners about
the pros and cons of such publications, and then describe the potential
of a patient-centered disease-based health registry specific to thyroid
cancer to improve the quality and depth of large-scale database
research in thyroid cancer,” Mehra said.
For clinicians to critically interpret
clinical research based on data from such registries, understanding
their collection methods and composition is of fundamental importance,
according to the researchers.
Most publications from population-based cancer
registries, which exist in every state in the United States, use data
from the Surveillance, Epidemiology and End Results database program,
which is a group of 20 registries selected to be representative of the
Although the surveillance program is a
powerful tool to study epidemiology and outcomes, the program cannot
capture data that could help to improve patient care, including details
about nodal disease, according to the researchers. Further, follow-up is limited to survival status and cause of death.
Health systems-based cancer registries gather
incident cases in a particular setting, whether it is a single
institution, multi-institution, payer-based or hospital-based registry;
the investigators highlighted the National Cancer Database as the
premier multi-institution program, capturing an estimated 67% of new
cancer cases in the United States.
Despite their utility in providing data to
understand thyroid cancer, including predicting patient prognosis and
stratifying patient risk, there exists a lack of depth in data collected
and a bias in types of patients treated, according to the researchers.
Further, quality of data from large databases can affect statistics, and
follow-up can drop off as patients change treatment locations.
Patient-based registries, targeting specific
questions among patients with a particular disease or who have undergone
a certain treatment across clinical sites, would be especially helpful
in thyroid cancer where much coordination is required among specialists
and better data collection and analysis is needed, according to the
researchers. As of now, there are no such tools.
“A cancer registry that follows a specific
patient, is integrated into physician work-flow, and collects data
across different treatment sites and different payers does not exist in
the current fragmented system of health care in the United States,” the
A future of improved care The TCCC could fill this gap, according to dozens of
researchers who have worked with the Thyroid Head and Neck Cancer
Foundation to pen a series of papers in the past year detailing why and
“The TCCC provides portability of information for patients and physicians,” Mark L. Urken, MD, FACS,
of the department of otolaryngology head and neck surgery, Icahn School
of Medicine, Mount Sinai Beth Israel Medical Center, told Endocrine Today.
“It enhances communication between the physicians involved in the care
of a single patient, in particular for clinicians who are not connected
by a common electronic health record.”
In another review published in Thyroid,
Mehra and colleagues demonstrated how the program, through advanced
technology, addresses recommendations laid out by the Institute of
Medicine to guide health care organizations and clinicians in
redesigning the care process.
Among the TCCC features are: automated disease
staging based on scoring systems; illustrated educational videos;
personalized clinical decision-making modules; data portability for
sharing purposes; “ask the experts” and “frequently asked questions”
modules; workflow integration; and data for comprehensive analysis in
addressing difficult questions in disease management.
The 12 clinical decision-making modules within
the repository process patient data and display personalized treatment
“This offers in-depth understanding for
patients who are so empowered to participate in the numerous decisions
that must be made during their thyroid cancer journey,” Urken said.
In an analysis of the management of patients with recurrent/persistent well-differentiated thyroid cancer published in Head & Neck,
Urken and colleagues said the modules “allow for easy adoption of
contemporary knowledge, making this information accessible to both
patient and clinician.”
Fully compliant with the Health Insurance
Portability and Accountability Act (HIPAA), the TCCC functions as a
repository of disease-specific patient information; it already contains
more than 700 patients, with at least 1,000 anticipated by the end of
the first quarter of 2015, Urken said.
The TCCC has obtained approval for prospective
and retrospective patient entry from the Western Institutional Review
Board. It also has already achieved institutional review board approval
at Oregon Health Sciences University and Stanford University and is in
the final stages of approval at Johns Hopkins Medical Center.
The program continues to make additions and
improvements. “We are launching an ultrasound imaging module that will
provide a much more user friendly interface for efficient and rapid
reporting of ultrasound results,” Urken said.
A demonstration of the TCCC is available to view online at www.thyroidccc.org/intro.