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).


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.


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.