The NF2 Biobank is an open, ongoing collection of tissue samples and other biospecimens, including blood and bodily fluids donated by people with NF2. The Biobank has been developed by NF2 BioSolutions with the generous support of private donations and grants to accelerate NF2 research.
Because NF2 is a rare disorder, researchers are limited by the lack of available tissue with which to conduct research. Until recently, there has not been any substantial collections of NF2 tissue or body fluids to support ongoing or new research. The NF2 Biobank was established in Spring of 2022 and will provide researchers with invaluable medical and scientific information that will help understand and treat patients today, and hopefully find better treatments and a cure for NF2 in the future.
Why should you donate your tissue, blood or fluids?
Research is the key to developing new treatments and cures for diseases, and researchers need tumor tissue and blood from NF2 patients to understand disease progression and speed early development of new drugs and therapies. As a rare disease patient and a Biobank donor, you will be directly contributing to NF2 research!
NF2 BioSolutions will direct samples immediately to previously approved researchers with the aim of furthering NF2 research.
How to Contribute
How does the process work?
OUR GOAL IS TO MAKE THIS PROCESS AS SIMPLE AS POSSIBLE
Once you provide our team with information about your upcoming surgery or procedure, you will be asked to sign a Consent Form. This will allow our team to inquire about your upcoming surgery or procedure, or any tissue collected in the past. Additionally, this will give our team permission to collect any medical information from your doctor that may be directly relevant to the tissue or fluids you donate. Once this step is complete, your job is done. Our team will take care of contacting the hospital and coordinating the transfer of the tissue or fluids to the NF2 Biobank.
Please contact our team with your surgery or procedure information as early as possible. As soon as you provide us with information about your upcoming surgery or procedure we will be in touch with you. In the meanwhile, if you have any questions please reach out to our team.
Tissue, blood, and fluid specimens will be collected both prospectively and retrospectively, where possible.
This will depend on the willingness of the hospital to release samples, which can hinder the collection.
Many patients with NF2 may be treated at hospitals that do not have an existing relationship with NF2 BioSolutions and which may not have experience with tissue procurement; however, we will do our best in these cases to collect the samples.
Patty Cogswell will be in charge of the process and available to answer any questions you may have Patty@nf2biosolutions.org
Advanced planning is helpful in coordinating specimen donations, so we would ideally like to have notice as soon as possible, however we know that there will be cases where notification of surgery may be very short, sometimes less than a day; therefore, we have developed our protocol to accommodate the desire of patients to donate specimens despite the logistical challenges.
No, the collection and processing of samples will have no cost for patients.
No, at this time we cannot collect samples outside of USA.
Your privacy is important for us so samples sent to approved researchers will be identified only by a code number that is free of patient identifiers. No individually identifiable information will be provided to recipient researchers.
No, since all samples will be unidentified there will be no way to access any research results or products developed by using your specimens and/or data.