| What happens
to the results of the research studies?
Researchers who obtain material from the CTB agree to provide
the results of their investigation on a case-by-case basis.
This information will not be used until after the researchers
have published their findings, but it will allow the results
of all of the studies to be correlated at a later date, so
that, for example, the investigations by different groups
of a number of different genes can be correlated to study
their interactions. The provision of extracted nucleic acid
from thyroid tissue, rather than each researcher being provided
with a small piece of tissue maximises the amount of data
that can potentially be obtained from a single operative specimen
and will enable multiple molecular biological studies to be
carried out for each case.
With the launch of the CTB portal researchers wishing to access
biomaterials can now select those cases from which they would
wish to receive samples. The CTB Data Warehouse, which is
in the final stages of development, will allow researchers
to upload research data arising from their projects that have
used CTB materials, and permit applicants to request access
to this data. On-line application for data should be available
by the end of 2011. In the meantime, some data has been uploaded
into the Data Warehouse and applicants using the CTB portal
may elect to view whether or not research data is available
for those cases they have selected. Applicants who might be
interested in accessing this data in advance of the formal
application process becoming available should contact the
secretariat.
Where is the CTB located?
The tissue banks are situated in two of the countries most
exposed to fallout from Chernobyl; one at the Institute of
Endocrinology and Metabolism in Kiev, Ukraine and one at the
Medical Radiological Research Centre of the Russian Academy
of Medical Sciences in Obninsk in the Russian Federation.
Each Bank consents patients and prepares and stores material
from its own population. To date each Centre has maintained
its own database for the CTB with a secure, integrated database
of data from both countries being maintained at the Coordinating
Centre at Imperial College, London. Development of a new database
and web interface as part of the CTB portal now allows each
Centre to log cases centrally so that key information can
be made available to researchers while ensuring that each
institute has access to the complete data from its own population
at any time.
Study cohort
The CTB includes material and information from all patients
with thyroid carcinomas and cellular follicular adenomas from
the contaminated oblasts of the Russian Federation (Bryansk,
Kaluga, Tula and Oryol) and Ukraine (Kiev, Kiev city, Cherkasse,
Chernigov, Rovno, Zhitomyr and Sumy) who were born after 26th
April 1967 (i.e. aged under 19 at the time of the Chernobyl
accident) and operated on or after the 1st October 1998. Detailed
standard operating procedures for the collection and documentation
of specimens and blood samples have been agreed with professional
staff involved in the collection of material, and ethical
standards agreed upon with the relevant authorities, conforming
to the requirements of each country involved, including those
of the funding organisations. Standard operating procedures
for collection of information and material have been approved
by the relevant Ethical Committees. Each specimen is given
a code authorized by the appropriate person responsible for
the management of the resource in each of the three countries.
The age, sex, date of birth, date of operation, oblast and
country of residence are recorded for each specimen stored
in the CTB, and are made available to researchers with approved
projects receiving material from the bank. Information enabling
researchers to identify an individual patient (e.g. name,
address etc) is stored separately and password protected,
in the Institutes in Ukraine and Russia and is not available
to researchers. A subproject to link the large amount of measured
or calculated dose measurements, which are available for the
populations resident in the affected areas, with cases in
the CTB is nearing completion. In future this information
will be available to researchers as part of the data set detailed
above.
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