Biobank Tissue for NF1 Research

Patient-derived tissue represents a core tool that is critical to support research that will improve our understanding of disease formation mechanisms for neurofibromas, and help drive the discovery of new therapeutics for NF1 patients. As part of our commitment to providing research tools to help NF1 investigators, NTAP has dedicated itself to the establishment and ongoing support of an NF1 biospecimen repository containing high quality, clinically annotated tissue to help drive your research efforts.

The Johns Hopkins NF1 Biospecimen Repository is an NTAP-funded initiative under the direction of Dr. Christine Pratilas. This biorepository is an exceptional resource for researchers because it takes advantage of
1) One of the busiest NF clinics in the country, with NF medical physicians and surgeons invested in the process of tissue collection and banking
2) Unique expertise and experience in tissue acquisition and handling

 

About the biorepository

This is a biorepository of tissue, buffy coat, plasma and serum from patients with NF1 who are undergoing surgical removal of a lesion including a cutaneous neurofibroma, a plexiform neurofibroma, an atypical neurofibroma, a diffuse infiltrating neurofibroma, a malignant peripheral nerve sheath tumor (MPNST), as well as breast cancer, gastrointestinal stromal tumor (GIST), and glioma.

Following surgery, all biospecimens are swiftly processed and banked following procedures outlined by the NCI Best Practices. Biospecimens are pathologically diagnosed, undergo genomic characterization studies and are maintained in a fully-annotated clinical database. Furthermore, biospecimens are processed and xenografted quickly (to minimize ischemia time), all vials are labeled prior to aliquot division to ensure accurate identification of specimens, and all tumor specimens removed from different anatomical locations or different locations within the same tumor are clearly identified and labeled as such.

 

Christine Pratilas, M.D., Johns Hopkins University

Requesting biospecimens

Before submitting a request, please review complete information, including an updated list of samples and the Standard Operating Procedures used, at the Johns Hopkins NF1 Biobank Repository Project.

To request specimens from John Hopkins NF1 Biospecimen Repository please use the specimen request form. Completed forms should be sent to Dr. Pratilas at cpratil1@jhmi.edu and cc: to JHnf1bank@exchange.johnshopkins.edu.

The biobank team will reply to the submitting investigator to discuss any legal issues. Next, the biobank team will submit the request to Johns Hopkins Internal Review Board (IRB) for review. Once the IRB approves the request and permission has been secured, the biobank team can proceed to fulfill the request. Investigators are usually notified of a decision within approximately two weeks.

Read about the Biospecimen Repository project’s background, goals, specific aims, methods, results and impact under the auspices of Dr. Christine Pratilas on Synapse.

 

Biospecimen sharing process

NF1 patients who are interested in taking part in a study and are willing to donate samples for the NF1 biospecimen repository should fill out a consent form. Download the consent form for J1649 NF1 Biospecimen Repository and submit to Dr. Christine Pratilas and Dr. Stavriani Makri .