I had a surgery or I will have a surgery soon, how do I share my tumor sample for boosting NF2 research ?
Fill up this form: https://redcap.chop.edu/surveys/?s=F9L8ED7W33
If you have any questions, contact Beth Frenkel at FRENKELE@chop.edu
Here is what will happen once you filled the form:
NF2 BioSolutions is uniting researchers/clinicians to kick off the NF2 Tissues/Cells bank. We are getting NF2 surgeons (that remove tumors) and research labs (that need tumors) to signup and benefit from a large number of NF2 tissues/cells.
Above, on the right, Nolan (15) has a peripheral schwannoma removed. On the left, Karen (13) has skin plexiform schwannoma removed from the foot. With these fresh tissues, the NF2 Biobank can culture the tumor cells and send them to labs so they can test their therapy on it. We need more tissues, please let us know if you have peripheral, skin or internal tumors to remove.
For in depth explanation, watch our webinar aired in October 2020, where Dr Adam Resnick explain to us how important is to donate tissue for accelerating the research.
Watch the recording.
How it works?
How will the NF2 Tissues/Cells be used?
Once we have a bank of a variety of tumors, numerous cell lines of the various presentations of NF2 can be created so that a treatment’s effectiveness can be evaluated for all the various NF2 gene mutations. Presently, most researchers are using cell lines created years ago that we know do not reflect the various presentations of NF2. Here are some examples of use:
- To create new types of cell lines
- To test small molecular compounds on different types of cell lines
- To create new types of animal models (by injecting NF2 cells into mice xenograft)
- To expand and explore more immunotherapy projects
Why do we need an NF2 Tissues/Cells Bank today?
After meeting many researchers and labs directors, especially with the gene/cell therapy researchers that NF2 BioSolutions is funding, we discovered that access to NF2 tissues is a big roadblock for research. It is very time consuming and hard for researchers to get access to frozen NF2 tumors, fresh tumors and NF2 cell lines. Some of the reasons are:
- Complex process for sharing and transporting tissues, especially fresh tissues
- Non collaborative environment between hospital and research centers and sometimes collaboration challenges within institutions
- Need for many different types of NF2 mutation samples
We also have new researchers interested in NF2. If those researchers do not have to worry about the time, money and effort to take an idea, find the best cell line/tumor samples (which presently we know is very limited) then carry out the experiment, they are not only likely to become interested in NF2 research, but remain interested in NF2 research. It also promotes a more collaborative approach where ideas can be harnessed, expanded upon, and ultimately used to cure NF2.
How is NF2BioSolutions collaborating with CBTTC ?
CBTTC (Children’s Brain Tumor Tissue Consortium) has all the facilities for storing and analyzing tissue samples. CBTTC manages all the authorizations and the process for receiving and delivering tissue samples to research centers. NF2 BioSolutions is providing the network of NF2 surgeons and clinics that will allow patients to have their tumors surgically removed and sent to CBTTC. Once more tumors are banked, CBTTC can perform a series of analysis and then share that information for everyone to learn from. NF2 BioSolutions will also help CBTTC to reach to more international healthcare centres, in more countries.
Thanks to your donations, NF2 BioSolutions will be financing the storage and the analysis of the NF2 samples.
What will the money raised be used for?
CBTTC already has the storage facility, equipment and researchers in place. The initial $50,000 will be used to use this existing infrastructure, specifically for NF2 tumors. Additional expenses are needed to perform analysis like genome sequencing or cells line creations that will be shared with all the NF2 research labs.
FAQ
As the name implies Children’s Brain Tumor Tissue Collection, does this mean only children’s tumors can be sent and banked?
No, ANYONE, ANY AGE with NF2 that is having a tumor removed can have their tumor sent to CBTTC. Our hope is that surgeons will become familiar enough with the benefit of this procedure that they will offer it to every NF2 patient having a tumor removed. In order to help educate them, we need EVERY NF2 patient request that their surgeon participate in this. CBTTC takes care of providing all the consents to be signed, the shipping procedures and supplies to make this as seamless as possible, but we need everyone on board.
Isn’t the hospital I am having my surgery at storing and researching my NF2 tumor?
Some patients and/or surgeons do request their tumor be sent for research, but not every hospital has the ability to store and research the samples, and most don’t research NF2. Also, once an institution stores the sample, depending on the consent obtained at the time, they are not allowed to share the sample because it was not part of the original consent. Research has changed so much recently, especially regarding Gene/Cell Therapy and immunotherapy, that no one could not have possibly envisioned what to consent for at that time. Lastly, some institutions and researchers have specific goals with the tumor sample they remove, making sharing of the specimens and research results difficult to share. The open-access NF2 tissue bank, that we are launching, helps to eliminate all of that. We will store the samples, perform some analysis, and make the results available to everyone so that we can quickly and efficiently unravel the complexities of NF2. A review panel with NF2 expertise will review all requests to be sure the samples are sent to qualified research labs and avoid replication of studies.
Can tissue sample be collected internationaly ?
CBTTC tissue bank currently has international member sites in Italy, Australia and China. Meyer Children’s in Florence and Hudson Institute of Medical Research in Melbourne are currently collecting specimens to send to CBTTC and/or generate sequencing data. CBTTC sites in China are currently generating data. NF2 BioSolutions will help CBTTC to reach to more international healthcare centres, in more countries.
NF2 BioSolutions needs your help to grow the first open-access NF2 Tissues/Cells bank (NF2 BioBank). Its cost is around $50,000 per year to manage it (receive/store/analyze/share with labs and researcher). Please donate.
