Optic Glioma Consortium

Optic Glioma Consortium


[Music] Here we’re in a position to launch,
really what’s gonna be a transformative study for this particular problem in NF1. Well, it will mean that we’ll be able
to give them informed opinions about whether or whether not they will require treatment. We collect larger samples and more generalizable
information that can be applied across the world. Optic pathway gliomas are not classic
malignancies. Most of them never grow to any extent; never cause vision loss at all. And
so there’s only a portion of them that need to be treated, probably no more than half,
and it has been a challenge for us to figure out the correct half to treat. We don’t
want to treat kids who would never need treatments. But we want to treat the kids who will need
treatment before they have bad effects. This study that will take place across
the world using multidisciplines will be very powerful in a number of fronts, again
by having these all of these patients systematically phenotyped, we’re really gonna make progress. It’s very exciting to finally get
oncologists, neuro-oncologists, ophthalmologists, neuro-ophthalmologists, NF experts, all in
one room to discuss this challenging tumor type and the management of it. [speaking over one another] …Boston Children’s Hospital …Children’s Hospital at Stanford …Cincinnati Children’s Hospital
…University of Utah, Salt Lake City …King’s College London
…Hospital for Sick Children, Toronto …Children’s Hospital Los Angeles
…University of Pittsburgh …University at St. Louis Missouri
…Cleveland, Ohio …Lurie Children’s Hospital Chicago
…Houston, Texas …UC San Diego
…I’m a neurologist …Stanford University
…I’m the Clinical Supervisor …Pediatric oncologist from Duke University
…Data Coordinating Center in Washington, DC …Neurologist at Guy’s and St. Thomas …Texas Children’s
…New York University …Mayo Clinic, Rochester…pediatric neuro-oncologist at Cincinnati Children’s Hospital This team effort will transform optic
pathway glioma care. We ask researchers and clinicians to collaborate while we also collaborate
amongst funding agents and other organizations that will make a difference for neurofibromatosis
patients. So hopefully in the next 3 to 5 years,
with the help of CTF and other funders like the Gilbert Institute, that we’ll be able
to get these answers. [Clapping]

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About the Author: Oren Garnes

3 Comments

  1. I almost 35 years old I can't wait for this day to come true some of my family and me been praying for this I have NF and so does hafe my family on my mom side

  2. he guys .

    I live in Germany and I have NF 1.

    In Germany there is very litle known about nf so finding a doctor that can help is very hard. gor a while I have been thinking about doing something to raise awareness about nf . if there is something I could do or if you need help with speding the word about th ctf. please write me I would be more than happy to help

  3. I had optic gelomas and on my last MRI they showed that they were gone which is good I also got scoliosis from my NF I have NF1

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