#BTSM Transcript

Healthcare social media transcript of the #BTSM hashtag.
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NCI Cancer Stats @NCICancerStats
White women are more than twice as likely as Asian/Pacific Islander women to die of #BrainCancer: https://t.co/7IcKRSClS7 #BTSM https://t.co/2q7xkMtJ4z
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
I’m doing my best to check in! Hiya @BTSMchat and everyone! #btsm
The Brain Institute of America @brainamerica
hello. i guess the oscars didn't interfere #btsm #brainamerica @brainamerica
Dr. Sabine Schwab @Sabine_NJ
I will be participating in the monthly #btsm tweet chat from now on for about one hour. #Sabine365
Low Grade Glioma Registry @gliomaregistry
Good Evening! I’m Dr. Elizabeth Claus, the organizer of the International Low Grade Glioma (LGG) registry./1 #BTSM
Lisa O'Leary @lisaoleary524
Hi all, Lisa here. Lost my husband Patrick to GBM 7/11/2015. I'm an advocate for @NBTStweets #BTSM
Low Grade Glioma Registry @gliomaregistry
I’m a professor at the Yale School of Public Health and a neurosurgeon at Brigham and Women’s Hospital in Boston./2 #BTSM
Liz Salmi | #StayHome @TheLizArmy
@brainamerica Were you able to use Tchat? I'm using native Twitter search. #BTSM
Dr. Sabine Schwab @Sabine_NJ
Today's topic: Low Grade Glioma Registry (@gliomaregistry) with special guest Dr. Elizabeth Brooks Claus. #btsm
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
I’m Heather. Person living with 2 Rare tumors called Gangliocytoma - or Lhermitte-duclos Disease. 2 crani’s in 2011. #btsm #rdsm
Sean Sachdev, MD @SeanSachdevMD
@BTSMchat Hi, radiation oncologist from Northwestern/chicago #btsm
Debi Cirasole @DebiCasserole
RT @adamhayden: T-minus 15 min for this month’s @gliomaregistry @BTSMchat 6p PT/9p ET. Using data to inform clinical decision making & impr…
Low Grade Glioma Registry @gliomaregistry
Let’s start with introductions while we wait for the chat to begin. #BTSM
Amanda Nottke @amanda_nottke
Hello, I'm Amanda Nottke, PhD. I'm an ASK Scientist with Cancer Commons #btsm
The Brain Institute of America @brainamerica
Brian Adams, President of Brain Institute of America. Just here to listen and help where I can #btsm #brainamerica @brainamerica
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat Liz here. Living with grade II astrocytoma for 9 years. 2 craniotomies. 24 months Temodar. Now trying to impact patient-reported outcomes through research with the Brain Cancer Quality of Life Collaborative: https://t.co/6bTFwwuzYN. #btsm #btsmqol Also a blogger. ;)
Adam Hayden @adamhayden
@amanda_nottke Hey, Amanda! Great to see/tweet you! #btsm
Liz Salmi | #StayHome @TheLizArmy
@lisaoleary524 @NBTStweets So glad you're here, Lisa! Loved your recent blog post. #btsm
Charlie Blotner @CBlotner_
@BTSMchat Hi everyone! Charlie in Seattle, here. MSW student, and #btsm chat co-founder 5 years out from awake resection for a grade II astrocytoma. Looking forward to tonight's topic after having enrolled in the registry myself!
Debi Cirasole @DebiCasserole
@BTSMchat 🙋 Present! 😄 #btsm
Low Grade Glioma Registry @gliomaregistry
Thanks so much to everyone who has joined, we are about to get started with Topic 1 in just a few minutes. #BTSM
Liz Salmi | #StayHome @TheLizArmy
@sean_sachdev @BTSMchat Great to see you Dr. Sachdev! #btsm
Cheri Costa Marsocci @cherimarsocci
@BTSMchat #btsm
Dr. Sabine Schwab @Sabine_NJ
Hi! I'm Sabine. German native, living in NJ. Diagnosed in 2014 with AA3. @theABTA Advisory Council member and BT advocate. In 2018, I tweet daily under #sabine365 to raise awareness. #btsm
Erica Robinson @eleighrobs
Hi everyone! Erica here. 7-year brain tumor survivor, and advocate and team captain for @NBTStweets #BTSM
Low Grade Glioma Registry @gliomaregistry
Tonight we are talking about the Low Grade Glioma Registry out of @YaleSPH and @BWHNeurosurgery. #BTSM
Adam Hayden @adamhayden
Adam here, from the crossroads of America, Indianapolis (“Naptown”), IN. GBM dx June 2016. Dad, spouse, advocate, blogger, speaker, vans and hoodie wearer. #BTSM
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@TheLizArmy I’m going to go try in a second #btsm
Low Grade Glioma Registry @gliomaregistry
Greetings everyone-nice to see many familiar "faces" #BTSM
Liz Salmi | #StayHome @TheLizArmy
@eleighrobs @NBTStweets How was the Brain Freeze??!!! Where was it? #btsm
Adam Hayden @adamhayden
@Sabine_NJ @theABTA Daily tweets have been great! Thanks for your commitment to awareness! #btsm
Low Grade Glioma Registry @gliomaregistry
Before we get started lets define what we mean by low grade glioma (LGG). Traditionally gliomas are classified grade I to IV. /1 #BTSM
Low Grade Glioma Registry @gliomaregistry
Grade I tumors are generally non-malignant, frequently curable with complete surgical resection, and occur primarily in children. /2 #BTSM
Low Grade Glioma Registry @gliomaregistry
Grade I tumors are believed to represent an entity separate from grade II-IV (seen primarily in adults). /3 #BTSM
Liz Salmi | #StayHome @TheLizArmy
@adamhayden And #fashionicon. #BTSM
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@adamhayden @Sabine_NJ Agreed! I love your daily tweets! #btsm
The Brain Institute of America @brainamerica
Hi Adam, how are you doing? Did you still want papers or information on a few concern, we discussed a few sessions ago? #btsm
Low Grade Glioma Registry @gliomaregistry
Adult grade II tumors (Low Grade Gliomas or LGG) include astrocytomas, oligo-astrocytomas (mixed) gliomas and oligodendrogliomas. /4 #BTSM
Erica Robinson @eleighrobs
@TheLizArmy @NBTStweets The #ctbrainfreeze was in West Haven, CT today. The warmth of the brain tumor community made you forget about the freezing cold water we ran into! For real! It was fun! #BTSM
Liz Salmi | #StayHome @TheLizArmy
RT @gliomaregistry: Before we get started lets define what we mean by low grade glioma (LGG). Traditionally gliomas are classified grade I…
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@LisaJaayyy Awake?! I never knew that! #btsm
Low Grade Glioma Registry @gliomaregistry
Any person currently over the age of 20 years with an initial diagnosis of LGG is eligible for the LGG registry. /5 #BTSM
Liz Salmi | #StayHome @TheLizArmy
@LisaJaayyy Awake craniotomy? Woah... You and @CBlotner_ have something in common. ☺️ #btsm
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@gliomaregistry But there’s a few “rare” adults out here too w/ Grade 1! 😉 #btsm
Dr. Sabine Schwab @Sabine_NJ
RT @gliomaregistry: Any person currently over the age of 20 years with an initial diagnosis of LGG is eligible for the LGG registry. /5 #BT
Adam Hayden @adamhayden
@TheLizArmy 👨‍🎤 #btsm
ADRIENNE SWAN @ADRIENNESWAN1
RT @NBTStweets: In one hour, our friends @btsmchat host Dr. Elizabeth Claus, and will discuss the @gliomaregistry. You can participate at…
Charlie Blotner @CBlotner_
@TheLizArmy @LisaJaayyy Old news! #btsm
Low Grade Glioma Registry @gliomaregistry
Now, let’s get started with T1… #BTSM
Liz Salmi | #StayHome @TheLizArmy
@diegomprost @BTSMchat Glad you're here Dr. Prost! #btsm
Victoria @VictoriaBBurns
@BTSMchat #BTSM
Low Grade Glioma Registry @gliomaregistry
First-some background. Why do we need the LGG registry?/1 #BTSM
Low Grade Glioma Registry @gliomaregistry
Treatment and survival times for this young group of patients (30,000 or more in the US alone!) have not changed over the past forty years, few environmental exposures have been consistently linked to risk and the optimal treatment remains unclear./2 #BTSM
Liz Salmi | #StayHome @TheLizArmy
I registered and sent in my info/data/med record to participate in the Low Grade @gliomaregistry a little over a year ago. It was fun to collect everything to participate. #btsm https://t.co/5TOVRxN2vz
Low Grade Glioma Registry @gliomaregistry
Time to move the field forward!/3 #BTSM
Albert @thonioand
RT @gliomaregistry: Adult grade II tumors (Low Grade Gliomas or LGG) include astrocytomas, oligo-astrocytomas (mixed) gliomas and oligodend…
Low Grade Glioma Registry @gliomaregistry
So how do we plan to do this?/1 #BTSM
Matt Cotcher @MLCotcher
Adult Grade II, checking in! (Although some would question my adult-ness) #btsm
Dr. Sadhana Social Distance Jackson @DrSadhanaJ
Here to listen in on the #btsm chat! #BrainCancer #btsmqol #glioblastoma
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry What is considered "young" when it comes to people with brain tumors/brain cancers? Is it 40, or 60? #btsm
Low Grade Glioma Registry @gliomaregistry
:) #BTSM
Dan Real @danreal21
12 year old lgg on brain stem - wait and watch #btsm
Charlie Blotner @CBlotner_
I'm curious: Who here had heard of the LGG Registry prior to tonight? 🧐🧠 #btsm https://t.co/FC9t0aejFy
Low Grade Glioma Registry @gliomaregistry
Our study will enroll patients currently 21 years or older #BTSM
Liz Salmi | #StayHome @TheLizArmy
@DrSadhanaJ Thanks for joining! I have been appreciating your tweets and use of #BTSM when sharing research.
Dr. Sabine Schwab @Sabine_NJ
Reasons for Low Grade Glioma Registry: #btsm https://t.co/lQfzvboPm1
Liz Salmi | #StayHome @TheLizArmy
@danreal21 You are 12 years old, or you are aware of your tumor for 12 years now? #btsm
Liz Salmi | #StayHome @TheLizArmy
RT @CBlotner_: I'm curious: Who here had heard of the LGG Registry prior to tonight? 🧐🧠 #btsm https://t.co/FC9t0aejFy
Low Grade Glioma Registry @gliomaregistry
We will enroll and collect clinical/biological/quality of life (QOL) data for 2000 LGG patients via the internet. We have begun with the generous support of @ABTA @NBTS @IBTA and LOGLIO. /2 #BTSM
National Brain Tumor Society @NBTStweets
RT @Sabine_NJ: Reasons for Low Grade Glioma Registry: #btsm https://t.co/lQfzvboPm1
Adam Hayden @adamhayden
@CBlotner_ 🙋‍♂️ via @NBTStweets #btsm
Low Grade Glioma Registry @gliomaregistry
Excellent question-What are some of the questions the LGG registry will study?/1 #BTSM
Diego Prost @diegomprost
T1. will be registry. I'm having so many supporters from surgery departments around the metropolitan area of Buenos Aires. I'm completely encourage to help with the registry #btsm
Dr. Sabine Schwab @Sabine_NJ
@CBlotner_ I did! I met Dr. Claus at the @theABTA conferences in 2016 and 2017. #btsm
National Brain Tumor Society @NBTStweets
RT @gliomaregistry: Excellent question-What are some of the questions the LGG registry will study?/1 #BTSM
Low Grade Glioma Registry @gliomaregistry
Sorry about mis-tagging. A generous thank you to @NBTStweets @theABTA @theIBTA for their support! #BTSM
Liz Salmi | #StayHome @TheLizArmy
@ZHeatherChamp @gliomaregistry I believe @NIHBrainTumor is doing a registry for people with all kinds of tumors and are specifically looking for people w/rare tumors. #btsm
Lisa O'Leary @lisaoleary524
@CBlotner_ I only knew about it through the promotions for tonight's chat - I tend to focus more on GBM and HGG's, so here to learn #btsm
Low Grade Glioma Registry @gliomaregistry
To allow patients to better judge the relative benefit of treatment timing and selection, we will be the first group to assess quality of life/symptoms/neurocognitive function in a large cohort of LGG survivors across treatment modality./2 #BTSM
Adam Hayden @adamhayden
@gliomaregistry @Abta @nbts @ibta Big question for one tweet, so feel free to defer: what is your data collection protocol? #btsm
Low Grade Glioma Registry @gliomaregistry
also-By looking at tumors from patients with multiple surgeries, to study how genetic mutations (and outcome) change by treatment selected (chemotherapy, radiation, observation) to better select treatment./3 #BTSM
National Brain Tumor Society @NBTStweets
RT @gliomaregistry: To allow patients to better judge the relative benefit of treatment timing and selection, we will be the first group to…
Liz Salmi | #StayHome @TheLizArmy
@adamhayden @CBlotner_ @NBTStweets I heard of the LGG registry through Charlie Blotner, then tweets from @theABTA conference (maybe shared by @Lifeiskitsch). #BTSM
Liz Salmi | #StayHome @TheLizArmy
@diegomprost So this is an International registry? Interesting! #btsm
Liz Salmi | #StayHome @TheLizArmy
@Sabine_NJ @CBlotner_ @theABTA Pic or it didn't happen! 😉 #btsm
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@TheLizArmy Did you mention this to me before? Right? #btsm
Charlie Blotner @CBlotner_
@diegomprost Fantastic to hear that your efforts are being well received. #btsm
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@LisaJaayyy @CBlotner_ I’m sure neither do Gangliocytoma #btsm
Liz Salmi | #StayHome @TheLizArmy
@LisaJaayyy @CBlotner_ Check out the @NIHBrainTumor registry. They are taking all comers! #btsm @Tsarmstrong01 might have the link.
The Brain Institute of America @brainamerica
to followup on Adam's question. what is the distribution of the patients samples (% male vs female) etc #btsm
Liz Salmi | #StayHome @TheLizArmy
@ZHeatherChamp I did! Search the @NIHBrainTumor site to find the details. #btsm
Low Grade Glioma Registry @gliomaregistry
We are about to move to T2 so please take a minute to share some closing thoughts on T1. #BTSM
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@TheLizArmy @LisaJaayyy If that’s the one you mentioned to me previously, you have to be in proximity to the location. I can’t afford travel so I was not eligible. #btsm
h e a t h e r z e e🦋🇺🇸 @ZHeatherChamp
@TheLizArmy @NIHBrainTumor Thx! Done and done. I wasn’t eligible because I didn’t live in the state. Ugh #btsm
Adam Hayden @adamhayden
@gliomaregistry Some concern in GBM community that standard of care may contribute to more treatment resistant recurrence. Similar worries for LGG? #btsm
Liz Salmi | #StayHome @TheLizArmy
@lisaoleary524 @CBlotner_ I believe one of the reasons the Low Grade @gliomaregistry is important, even for people with GBM, is that it is a fairly new concept to have "longer term" survivors of malignant brain tumors. #btsm
Low Grade Glioma Registry @gliomaregistry
You’re probably wondering: “What are participants asked to do upon enrollment in the LGG registry?”/1 #BTSM
Charlie Blotner @CBlotner_
@gliomaregistry @Abta @nbts @ibta What made you decide to collect quality of life data for LGGs? Has this area been studied before? #btsm
Liz Salmi | #StayHome @TheLizArmy
@lisaoleary524 @CBlotner_ @gliomaregistry We don't know what the side effects will be for longer-term survivors in 10, 20 years (should we be so lucky). If we start studying us now, we will be prepared for when survival rates improve for ppl w/GBM. #btsm
The Brain Institute of America @brainamerica
to followup on adam's question. what is the distribution of patient samples in the registry. is there a bias in gender , age? #btsm #brainamerica @brianamerica
Dave @oncoscientist
RT @NCICancerStats: White women are more than twice as likely as Asian/Pacific Islander women to die of #BrainCancer: https://t.co/7IcKRSCl…
Low Grade Glioma Registry @gliomaregistry
We ask patients for written consent, a pathology report and to complete an online questionnaire. We also ask for a saliva sample (via mail)./2 #BTSM
Adam Hayden @adamhayden
@TheLizArmy @lisaoleary524 @CBlotner_ @gliomaregistry I’ll be one of the improved survival rates in a couple decades! ;) 🤘🤘 #btsm
Dr. Sabine Schwab @Sabine_NJ
RT @gliomaregistry: Our study will enroll patients currently 21 years or older #BTSM
Low Grade Glioma Registry @gliomaregistry
What are some of your concerns about enrolling in a brain tumor registry or research study? #BTSM
Charlie Blotner @CBlotner_
Chat participants: how many of you (patients, caregivers, and clinicians) were able to find studies to look to that talked about QOL when selecting treatment protocols? Not that there are many options, but, you get the jist of what I'm asking. #btsm
Lisa O'Leary @lisaoleary524
@adamhayden @TheLizArmy @lisaoleary524 @CBlotner_ @gliomaregistry Amen Adam, and I'll be right by your side the whole way! #btsm
Liz Salmi | #StayHome @TheLizArmy
@adamhayden @lisaoleary524 @CBlotner_ @gliomaregistry Being able to compare long term outcomes for ppl who had radiation+chemo, vs chemo alone will be a big deal. #BTSM
Dr. Sabine Schwab @Sabine_NJ
LGG registry will study quality of life amongst other questions: #btsm https://t.co/DKFIQ9Y1eu
Diego Prost @diegomprost
@gliomaregistry Has the questionnaire a Spanish version? Is it there any facility to affording the mailing cost for the samples? #btsm
Low Grade Glioma Registry @gliomaregistry
Not sure if this went thru so will resend-LGGer's are young (average age at diagnosis is 41 years) and in the prime of life-working, driving, planning families, taking care of self and others-maintaining QOL and NCF extremely important #BTSM
Adam Hayden @adamhayden
@lisaoleary524 @TheLizArmy @CBlotner_ @gliomaregistry 🤜🤛💥 #btsm
Liz Salmi | #StayHome @TheLizArmy
And to translate that acronym, QOL = quality of life. Quality of life attributes include maintaining your regular activities, fatigue, mood, etc. #BTSM https://t.co/5rJArRm9M6
The Brain Institute of America @brainamerica
who has access to study samples., who decides what samples are used for, do patients have any control over what samples are used for, etc open ended questions to spark conversation #btsm #brainamerica @brianamerica
Dr Vicky Forster @vickyyyf
@BTSMchat @gliomaregistry @YaleSPH @BWHNeurosurgery Oops! Late! Hope I haven't missed too much...! #btsm #btsmchat https://t.co/hhHKBIWZZD
Charlie Blotner @CBlotner_
@brainamerica @BrianAmerica Also curious to know more about the race and ethnicity make up of the sample. @TheLizArmy sent @adamhayden and I this article last week re: race and brain cancer. https://t.co/qxWWdC9CwT #btsm
Liz Salmi | #StayHome @TheLizArmy
@lisaoleary524 @adamhayden @CBlotner_ @gliomaregistry I'll be right next to @mrsadamhayden and @lisaoleary524 (and I'm guessing @CBlotner_ as well). #BTSM
Lisa O'Leary @lisaoleary524
@CBlotner_ Honestly Charlie I didn't even know that was a thing when Patrick was dx. We were offered standard of care, no options, told must be done immediately. I didn't know to ask anything different. #btsm
Charlie Blotner @CBlotner_
@MLCotcher Totally. Don't forget to tack #btsm on to the end of your tweets so that everyone can see them!
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry Dr. Claus: What does "NCF" mean? #btsm
Low Grade Glioma Registry @gliomaregistry
Neurocognitive Function= NCF (memory, word finding, ability to think, multitask) #btsm
Charlie Blotner @CBlotner_
@TheLizArmy @adamhayden @lisaoleary524 @gliomaregistry With that, I continue to wonder what the increments of "long term" will be measured as as we move forward, and time from diagnosis to death increased (hopefully exponentially!). #btsm
Adam Hayden @adamhayden
Y’all clinicians wonder about patient experts? Here’s one of us noting the significance & need for longevity studies for different treatment protocols in low grade gliomas. It’s not all 5k walk runs & ribbons. ⚡️#btsm https://t.co/5TK2rn3JvF
TeamCatherine @TeamCatherine1
RT @GBM_WARRIOR: I personally love more than a few. #love #fighter #HOPE #BTSM #GRAY #advocacy #people #graymatters365 #cure #Cancer #Chang
Low Grade Glioma Registry @gliomaregistry
Excellent question! The study has been approved by the Yale University School of Medicine Institutional Review Board (IRB). /1 #BTSM - FYI-An IRB monitors the safety and privacy precautions for all studies done at Yale. /2 #BTSM
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry Dr. Claus: How do you think the registry will impact work being done in GBM? And is there a similar registry for people with GBM? #btsm #glioblastoma
Low Grade Glioma Registry @gliomaregistry
The study has been approved by the Yale University School of Medicine Institutional Review Board (IRB). /1 #BTSM #btsm
Charlie Blotner @CBlotner_
@lisaoleary524 Absolutely. The only reason I knew to research proton beam radiation, brain mapping, etc. was bc I had nearly 5 years from initial diagnosis to growth that demanded surgical action. I'd assume that that's a very atypical narrative. i've never met anyone else with the same. #btsm
Adam Hayden @adamhayden
@CBlotner_ @brainamerica @BrianAmerica @TheLizArmy We’re a think tank; equal credit, but I did find that article. ;) ❤️ #btsm
Liz Salmi | #StayHome @TheLizArmy
RT @adamhayden: Y’all clinicians wonder about patient experts? Here’s one of us noting the significance & need for longevity studies for di…
Liz Salmi | #StayHome @TheLizArmy
@adamhayden Shucks. #btsm https://t.co/7wjJTQVOiu
Low Grade Glioma Registry @gliomaregistry
#btsm We ask patients for written consent, a pathology report and to complete an online questionnaire. We also ask for a saliva sample (via mail)./2 #BTSM
Low Grade Glioma Registry @gliomaregistry
#btsm We are about to move to T3 so please take a minute to share some closing thoughts on T2. #BTSM
Charlie Blotner @CBlotner_
@adamhayden @brainamerica @BrianAmerica @TheLizArmy Oops! The 🧠🤓 trust - back at it again. #btsm
Low Grade Glioma Registry @gliomaregistry
#btsm Not sure if this went thru so will resend-LGGer's are young (average age at diagnosis is 41 years) and in the prime of life-working, driving, planning families, taking care of self and others-maintaining QOL and NCF extremely important #BTSM
Debi Cirasole @DebiCasserole
RT @gliomaregistry: Not sure if this went thru so will resend-LGGer's are young (average age at diagnosis is 41 years) and in the prime of…
The Brain Institute of America @brainamerica
#brainamerica @brainamerica my question earlier was, how much control do patients have regarding what studies their samples go to. or is this registry just for one study (or study group) #btsm
Liz Salmi | #StayHome @TheLizArmy
Ppl living with low grade glioma (slower growing brain cancers) have the luxury of time to devote to learning as much as possible about our disease. Other than medication "compliance," knowledge is the only sense of control we have over our unfortunate circumstances. #btsm https://t.co/BKxY162RKf
Adam Hayden @adamhayden
@vickyyyf @BTSMchat @gliomaregistry @YaleSPH @BWHNeurosurgery It’s Oscars night, and the best meme of the night award goes to... 👏#btsm
Low Grade Glioma Registry @gliomaregistry
#btsm and yes International-want to make it open to everyone including areas not traditionally covered-we have participants from Belarus, Spain, New Zealand, Australia, Canada, France, Great Britain and Turkey so far...
The Brain Institute of America @brainamerica
adam . yeah @ symbols are good. want to promote the group #btsm
Debi Cirasole @DebiCasserole
@TheLizArmy @gliomaregistry I'm hoping any progress made toward LGG treatments could stop progression/GBM. #btsm
Adam Hayden @adamhayden
@lisaoleary524 @CBlotner_ Most aggressive looking tumors/GBM dx in surgery within 48hrs. Little time to think. #btsm
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry I am registered in the @gliomaregistry. Getting access to my pathology and surgical reports was very hard. I don't have native access to this info in my patient portal. #BTSM
Low Grade Glioma Registry @gliomaregistry
#btsm Who here knows what a “clinical trial of exercise” is? #BTSM
Liz Salmi | #StayHome @TheLizArmy
@brainamerica I find starting the questions with "Dr. Claus" is hitting her radar. #BTSM
The Brain Institute of America @brainamerica
not sure if this went through. apologies if redundant who has access to study samples., who decides what samples are used for, do patients have any control over what samples are used for, etc open ended questions to spark conversation #btsm
Jeff Cee @jeff_ccc
@BTSMchat Sorry, late to the party... #BTSM
Low Grade Glioma Registry @gliomaregistry
#btsm A clinical trial of exercise means examining the association between exercise and quality of life, fitness, fatigue & neurocognition. #BTSM
Low Grade Glioma Registry @gliomaregistry
#btsm Exercise is defined as at least 150min per week of moderate intensity activity (brisk walking, biking, swimming, dancing, etc.) #BTSM
Dr. Sabine Schwab @Sabine_NJ
@gliomaregistry I'll try to make the registry known in Germany #deutschehirntumorhilfe e.V. (https://t.co/N9vtjkB6Pp) #btsm. Unfortunately, they lag behind when it comes to social media.
Liz Salmi | #StayHome @TheLizArmy
@jeff_ccc @BTSMchat Hey Jeff! Great to see you. You aren't too late. #BTSM
AP @radonconeuro
RT @gliomaregistry: Not sure if this went thru so will resend-LGGer's are young (average age at diagnosis is 41 years) and in the prime of…
Low Grade Glioma Registry @gliomaregistry
#btsm responding to questions re mailings-we pay the cost to and from for US participants and to patients in non US locations-generally costs the patient about 2-8$ US to send back to us #BTSM
Low Grade Glioma Registry @gliomaregistry
If funding was obtained for a clinical trial of exercise, would LGG patients be interested? What would your questions be about participating? #BTSM #btsm
Liz Salmi | #StayHome @TheLizArmy
@brainamerica Great question. Since I am a participant in the @gliomaregistry, I know from my experience that no tumor tissue was asked for as part of the study. Just surgical/pathology reports, and a saliva sample. #btsm
Dr. Sabine Schwab @Sabine_NJ
RT @gliomaregistry: #btsm responding to questions re mailings-we pay the cost to and from for US participants and to patients in non US loc…
Jeff Cee @jeff_ccc
@BTSMchat Jeff here from Vancouver, Canada. Had #glioblastoma surgery on 2017.05.01. Ran my #PersonalBest record of 47m20s at this morning's @westvanrun #WestVanRun10K . Grateful to be #StillAlive . Thanks & appreciation to @BCCancer & @bccancerfdn #BTSM
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry Dr. Claus: Will patients participating in the study be notified about the outcomes/results and research generated from our participation? #btsm
Low Grade Glioma Registry @gliomaregistry
#btsm what questions do LGG patients think are important to address?
Carolyn Pointer @CarolynAPointer
@CBlotner_ I didn’t see any, but I was looking at long term survival and progression free survival data. Then again, nobody asked me what QOL I wanted when I said “I want to watch my young kids grow up.” #btsm
Scott Holloway @heypunko
Late, as usual #btsm
Liz Salmi | #StayHome @TheLizArmy
@jeff_ccc @BTSMchat @westvanrun @BCCancer @bccancerfdn Overachiever! ... But no really, congrats. That is fantastic! #btsm
Adam Hayden @adamhayden
@jeff_ccc @BTSMchat @westvanrun @BCCancer @bccancerfdn Congrats, brother! Way to go after it! #PersonalBest #btsm
Charlie Blotner @CBlotner_
@heypunko Never too late to join! Welcome, Scott. #btsm
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry I would be interested in getting involved with that exercise trial. I am a big fan of participating in research. I don't mind sharing my data if it helps others. #BTSM
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry The question I have about the clinical trial of exercise: Will patients participating in the study be notified about the outcomes/results and research generated from our participation? #btsm
Charlie Blotner @CBlotner_
@TheLizArmy @gliomaregistry Same here - willing to share pretty much anything if it'll help future patients. BUT, it's important for me to be able to see the results of the study and work being done. #btsm
Liz Salmi | #StayHome @TheLizArmy
@heypunko Hey Scott! Better late than never. #btsm
Matt Cotcher @MLCotcher
@BTSMchat @gliomaregistry I recommend that @gliomaregistry make some of the FAQ-type information (What is an LGG? etc) easily accessible on the website. Let patients self-filter themselves out of the study, and save time and money for what's needed. #BTSM
Low Grade Glioma Registry @gliomaregistry
#btsm Thanks so much for joining the #BTSM tweet chat tonight! We have just a few minutes left, please take a second to share some closing thoughts for tonight #BTSM
Liz Salmi | #StayHome @TheLizArmy
RT @CBlotner_: @TheLizArmy @gliomaregistry Same here - willing to share pretty much anything if it'll help future patients. BUT, it's impor…
Dr. Sabine Schwab @Sabine_NJ
RT @gliomaregistry: #btsm what questions do LGG patients think are important to address?
Low Grade Glioma Registry @gliomaregistry
#btsm just seeing some tweets Question for folks: What would you consider to be some barriers to enrolling in the LGG Registry? How might @gliomaregistry be able to help mitigate them?
Low Grade Glioma Registry @gliomaregistry
#btsm we have staff available to help perform the questionnaire over the phone if they do not have a computer or are not able to use a computer and we have patient associates who will help interested perosns join
Low Grade Glioma Registry @gliomaregistry
#btsm contact us at glioma@yale.edu and we will figure out a way to help!!#BTSM
Liz Salmi | #StayHome @TheLizArmy
@MLCotcher @BTSMchat @gliomaregistry I agree w/ @MLCotcher. The LGG website could have more of the basics involved. Many people are familiar with the acronym GBM, but LGG is pretty unheard of unless you hang out in the research space. #BTSM
Adam Hayden @adamhayden
I love the patient-driven decision making that is implicit in Matt’s recommendation! #btsm @MLCotcher https://t.co/CGcPaBhsHQ
Dr. Sabine Schwab @Sabine_NJ
@gliomaregistry I'm not a LGG patient, but if I was, I wanted to know what I can do to prolong time between LGG diagnosis and recurrence with possible higher grade. #btsm
Low Grade Glioma Registry @gliomaregistry
#btsm I'll try to make the registry known in Germany #deutschehirntumorhilfe e.V. (https://t.co/W0QrqfpNpU ) #btsm. Unfortunately, they lag behind when it comes to social media. THANK YOU!!!
Charlie Blotner @CBlotner_
@gliomaregistry Is the population examined sectioned off by age and gender identity, or will all LGG patients be grouped together given tumor type? (a 21 year old cisgender male might have different baseline physical activity and interest levels than a 35 year old transgender woman) #btsm
Adam Hayden @adamhayden
@TheLizArmy @MLCotcher @BTSMchat @gliomaregistry I sleep on the couch in the research space ;) #btsm
Carolyn Pointer @CarolynAPointer
@BTSMchat Being an active and participating mom and wife - playing with my kids on the floor... #btsm
The Brain Institute of America @brainamerica
i saw mention of exercise and LGG see https://t.co/Cao1XqU9u8 for a paper on the topic #btsm
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry Barriers to registering in the study: ✔️ I don't have easy access to my pathology reports ✔️ I don't have easy access to my surgical reports ✔️ When I asked my medical team for this information they offered to FAX this to me (like it's 1992) #BTSM https://t.co/wYPqk3TjQ5
Low Grade Glioma Registry @gliomaregistry
#btsm Question for folks: What would you consider to be some barriers to enrolling in the LGG Registry? How might @gliomaregistry be able to help mitigate them? #btsm
Charlie Blotner @CBlotner_
Cosign. #btsm https://t.co/ItQqfChQMP
The Brain Institute of America @brainamerica
@brainamerica i saw mention of exercise and LGG see https://t.co/Cao1XqU9u8 #btsm
Matthew Katz, MD @subatomicdoc
Good evening, #btsm- sorry to join at the end. Looks like a great chat!
Low Grade Glioma Registry @gliomaregistry
#btsm yes-only 34 patients in that study but very nice results-the researcher involved is joining us for proposal to examine this in larger study with patients form the LGG registry!
Adam Hayden @adamhayden
@brainamerica Great link! Many thanks! #btsm
Low Grade Glioma Registry @gliomaregistry
#btsm If you are interested in joining or have additional questions you can email us at glioma@yale.edu –Thank you for taking the time to learn about our study! #BTSM
Charlie Blotner @CBlotner_
@gliomaregistry How many patients have been enrolled in the LGG registry thus far? #btsm
Low Grade Glioma Registry @gliomaregistry
#btsm Over 200 to date!! Help us to keep it moving forward!
Charlie Blotner @CBlotner_
@subatomicdoc Always great to see you, Matt! Hope you saw a great show tonight! 🎭 #btsm
Adam Hayden @adamhayden
@BTSMchat @BethanyKwan @CUMedicalSchool Shoes optional (inside joke; see: @MichaelDFratkin) #btsm
Matthew Katz, MD @subatomicdoc
@CBlotner_ My wife and I had a lovely night out, thanks! Hope all is well with you #btsm
Liz Salmi | #StayHome @TheLizArmy
@gliomaregistry What is your goal registration number for the LGG registry? #btsm
The Brain Institute of America @brainamerica
thank you; great topic #btsm
Liz Salmi | #StayHome @TheLizArmy
@adamhayden @BTSMchat @BethanyKwan @CUMedicalSchool @MichaelDFratkin Dr. @BethanyKwan is SO pumped for the next chat. #BTSM
Charlie Blotner @CBlotner_
@BTSMchat @adamhayden @TheLizArmy Note: I was not involved in the planning of this gif distribution 😂🤦‍♂️. #LeaveTheGifsTo @vickyyyf #btsm
#BTSM content from Twitter.