Description:
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The Czech National Lymphoma Registry (NiHiL) was established in 1999
in order to monitor epidemiologic data and to improve the diagnostic
evaluation and quality of treatment of patients with non-Hodgkin´s
lymphoma (NHL). The database NiHiL includes majority of patients
with NHL in the Czech Republic, treated in one of seven University
Hospitals and other smaller centres. This represents approx. 75% of
all lymphoma patients in the Czech Republic. Since 1999 until the
end of year 2016 there were registered 14000 pts.
The patients are registered into the registry in anonymized form at
the time of diagnosis after signing informed consent and data are
updated/collected at the end of first line treatment, at each relapse
including therapy for relapse and then annual follow-up and at the
time of death. The registration is submitted electronically via secure
internet system. For each patient are available following forms:
registration form, diagnostic form, treatment form, follow- up form,
and other malignancy form. The content of diagnostic form consists
of diagnosis according WHO classification including the copy of original
histology description, date of diagnosis, clinical stage, B symptoms,
nodal and extranodal involvement, laboratory findings and prognostic
systems (IPI, aaIPI, MIPI, FLIPII and others). The prognostic system
is calculated automatically. The diagnostic form is the same for the
first diagnosis and for the relapses. The treatment form consists of
detailed information on the treatment: chemotherapy regimens, therapy
with monoclonal antibodies, radiotherapy, autologous or allogeneic
transplant. Response assessment has been adjusted to the different
version of Chesson criteria for malignant lymphoma. It is expected
that comorbidity score and toxicities evaluation will be added into
the therapeutic form too.
The follow-up form is requested to be updated annually, besides that
in case of relapse or death. This form includes information about
clinical status, date of relapse or death.
The exports made from NiHiL content all data from registry and
survival data (overall survival, progression survival and disease free survival).
Data quality in the NiHiL has been checked by audits recently,
which have been carried out in each centre twice a year.
The data is analyzed according to NHL subtypes with endpoints: lymphoma
distribution, epidemiological data, prognostic characteristic, treatment
characteristics, response rate, relapse rate, mortality, PFS, OS, DFS,
Lymphoma specific survival, longterm toxicity.
The registry has been repeatedly supported by the grants of Ministry of
Health. A substantial number of papers originated from the NiHiL have been
published in last 15 years in both Czech and international journals. The
main aim of the registry is to collect data for malignant lymphoma for
better understanding of epidemiological and clinical data about this disease.
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