GUIDELINES
Users who want to take advantage of bank services must follow
the specific procedures reported below. For additional information,
researchers can contact the bank curators (see CONTACT INFORMATION).
SENDING SAMPLES
Users who want to access to the Bank Services for establishing
and storing lymphoblastoid cell lines and/or for isolating
and storing leukocytes, DNA or plasma, should contact
the bank at least 48 hours before sending the specimens.
Shipments should be sent early in the week (usually on
Monday or Tuesday) to ensure arrival before the weekend.
Users have to fill in the “Form for sending samples” with
their data. In addition, they must provide detailed clinical
data of the patient on a specific form (Form for sending
samples B); the inclusion of a family pedigree, if available,
is appreciated. The forms must be sent with the sample
and are available electronically or may be obtained by
e-mail contacting the Bank curators. If more than one sample
is sent, a form for each sample must be included.
Before sending the specimens, users have to obtain informed
consent from the patients or their parents. Before signing
the consent patients should be informed about the possibility
of banking their samples, its risks and benefits, the possibility
of authorising or not the use of samples for research and
the possibility of knowing or not the information that
could result from subsequent investigations. Moreover,
patients should be informed about the security procedures
employed to ensure confidentiality. When sending specimens
for the “Rett syndrome” or “Other” sections,
a copy of informed consent must be sent together with the
other forms.
For lymphblastoid cell lines establishment or leukocytes
isolation, a minimum of 5 ml of blood in sodium heparin
tubes is required and should arrive as soon as possible
after sampling, preferably within 48 hours and no later
than 72 hours. Shipments should preferably be sent early
in the week (usually on Monday or Tuesday) to ensure arrival
before the following weekend.
For DNA extraction and/or plasma isolation a minimum of
5 ml of blood containing 100 µl of sterile EDTA
0.5M pH8 is required. Samples should be sent at room temperature
immediately after sampling and should arrive within 24
hours. Samples which can not be sent immediately must be
shipped frozen. Note that for plasma isolation fresh samples
are necessary, frozen samples can not be used.
To protect confidentiality, upon arrival the samples will
be stripped of personal identifiers and assigned a code.
Personal and clinical data will be collected in a specific
database. Access to the data linking the code to the patient
and to clinical details will be restricted to the bank
staff through the use of a password.
No payment is required for the service, except for shipping
charges.
ORDERING SAMPLES
Biological samples stored in the bank are distributed only
to qualified professionals. Samples must be used for
research purposes only; no commercial use is allowed.
The specimens cannot be distributed to other investigators
without previous written permission of the Bank curator.
Researchers are asked to include the name of one of our
researchers and/or to acknowledge the bank in any paper
including results obtained using the bank samples/services.
If the requesting researcher is a Telethon scientist,
only the inclusion of the bank in the acknowledgements
will be requested.
In order to request samples researchers must contact the
bank curators and fill in the specific “form for
requesting samples”. The form is available electronically
(see FORMS) or may be obtained by e-mail contacting the
Bank curators (see CONTACT INFORMATION). The form must
be sent by mail. No materials will be released prior to
receipt of the signed form with a brief project description
and the agreement to accept the above reported terms. If
an user wants to order more than one sample, a form for
each sample must be submitted.
In order to request samples from the “X–linked
mental retardation” section researchers must ask
to join the Italian X-linked mental retardation network
(for details see the home page of the section and contact
bank curators).
No payment is required for the service, except for shipping
charges.
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