Biobank Leukemia, Myeloma, Lymfoma and Myelofibrosis

Hematological diseases such as leukemia lymfoma and Myelofibrosis are very
common cancers in the Netherlands. Lymfoma is one of the most prominent
malignant diseases in inhabitants of foreign descent. Every year around 1500
people are daignosed with leukemia, and yearly more than 1100 people die of
this disease. Although most patients are over 60 years old, leukemia, lymphoma
and Myelofibrosis can occur at every age. In contrast to the situation in
patients under 60 years of age, the survival of older patients is unfavourable.
In the last years there has been an explosion of innovative methods in
information- and bio-analytical technologies, new ways of both data-analyses
and analyses of bio-material. It is one of the key tasks of the Erasmus MC to
implement these innovations when possible. Yet, within the current
infrastructure, it is difficult to apply this technological improvement in an
effective and efficient manner.
Essential prerequisites for a succesful implentation are 1) standardisation of
collected clinical data and 2) standardisation of collection, treatment,
storage and analyses of biomaterial. In order to create an innovative
infrastructure within and between all eight dutch Universitary Medical Centers
(UMC's), that will improve the quality of scientific research and will lead to
better diagnosis, patientcare and -treatment, the Biobank 'Leukemia, Myeloma,
Lymphoma and Myelofibrosis' is founded. This Biobank is intended for large
collections of biomaterial, and relevant phenotypical data of the donor, which
will be coded and stored in a standardized manner, so that it can be coupled
with molecular data from the biomaterial.

The Biobank 'Leukemia, Myeloma, Lymphoma and Myelofibrosis' has the scientific
objective of gaining insight in molecular-biological and environmental factors,
that are involved in the development of malignant hematological diseases such
as leukemia, multiple myeloma, malignant lymphoma and Myelofibrosis, and to
gain important knowledge for the diagnosis, prognosis and treatment of these
diseases.

The organisation structure of the Biobank 'Leukemia, Myeloma, Lymphoma and
Myelofibrosis' facilitates the standardized collection of clinical data and
biomaterial and contributes to the increase in studypopulation size by being a
part of the national Pearl String Initiative. With this, the Biobank 'Leukemia,
Myeloma, Lymfoma and Myelofibrosis' intends to improve the quality and scope of
Dutch scientific research on malignant hematological diseases, with the goal of
a better diagnosis, prognosis and treatment of future patients.

The patient is selected for participation by his/her doctor, and informed both
by letter and verbally about the Biobank 'Leukemia, Myeloma, Lymphoma and
Myelofibrosis'. When the patient understands teh request and consents to the
collection of biomaterial and clinical data, he/she signs the informed consent
form. The clinical data of the patient (important for the research and agreed
upon by all UMC's) are collected and registered in an electronic patient file
by the docter/nurse.

As part of the standard health care procedures, a maximum of 50 ml extra blood
and a maximum of 30 ml extra bone marrow is taken from the patient during 4
standard withdrawals. In some cases, i.e. patients that (are suspected to) have
lymfoma, rest material of lymph gland tissue that is taken by the surgeon for
diagnosis is collected. In case of Myelofibrosis, rest material of the bone
marrow biopsy is collected. Additionally, saliva and some nail is collected as
reference material for the irregular tumor material.

The collection, transport, treatment and storage are performed in a
standardized manner. Intact cells, DNA, RNA and serum are stored in freezers
and liquid nitrogen as part of the Biobank 'Leukemia, Myeloma, Lymfoma and
Myelofibrosis'. Data of the biomaterial and clinical data are coupled in an
overall computer system, where all data are coded.

Together with all eight dutch UMC's, the Biobank 'Leukemia, Myeloma, Lymphoma
and Myelofibrosis' takes part in the Pearl String Initiative (PSI)
Coded data of all UMC's are coupled in a national overall database of the PSI.
Researchers can
submit research proposals, that are approved by an independant scientific
committee. The committee also determines if material, stored in the PSI
database, is appropiate for the proposed research. After permission by the
committee for the use of the material and clinical data, these will be coded a
second time and handed over to the researcher.

There is no risk involved in the collection of clinical data.
Body material is taken during the regular visit to the (poli)clinic of the
Erasmus MC. During blood collection and/or bone marrow punction there is a
small risk of pain at the place of insertion of the needle and/or a small
haematoma after collection. The risk of this procedure is small.
The extent of the burden for the patient is small since collection takes place
as part of the standard procedures for diagnosis.