A Nerve Sheath Tumor Bank from Patients with NF1
Johns Hopkins Kimmel Cancer Center in Baltimore
The primary objective of this protocol is to develop a tissue bank and blood from NF1 patients with PN and MPNST and to increase accessibility of these tissues to the research community through a collaboration with the children's tumor foundation tissue banking . The establishment of the tissue bank will improve access to tissue as a core tool to support discovery of new therapeutics for NF1 patients, and increase the collaborative research opportunities within the community.
Patient of any age with an NF1 diagnosis.Having surgery or biopsy, or collection of tumor containing material (i.e. ascites, pleural effusion, CSF) for a clinical indication.Consents to participation (collection of tumor or tumor fluid).Consents to have tumor material used for research purposes.
Every patient with NF1 who presents to Johns Hopkins for the purpose of resection or biopsy of a cutaneous neurofibroma, PN or MPNST will be offered the opportunity to sign consent to allow for extra tissue resected at the time of surgery to be banked by Dr. David Loeb’s laboratory. Tissue will be received for banking once an acceptable amount of tumor is retained by pathology for diagnostic purposes. The resection will be performed as a part of a patient’s clinical care to manage their disease. Additional blood for banking will also be drawn at the time of the collection of clinical blood specimens. A total of 32.5ml of blood will be collected. Urine will also be collected, if possible, into a standard urine collection cup for banking. It is preferred that urine and blood be collected within thirty days of surgery during one of the patient’s already scheduled clinic visits or immediately pre- or post-operatively in the PACU. After obtaining written informed consent, patient-reported pertinent medical and NF1 history and other clinical information will be collected. Once a sufficient amount of viable sample is received for banking, each sample will be given a unique identifier and logged into a secure database maintained by JHU SOM and partnered with the necessary clinical information linked to the specimen’s barcode.
03/05/2019 05:03 AM