29 – SSB30 Study: Seizures, Sleep & Behavior Study – 30 consecutive days of data – Ciitizen / SYNGAP1

Event Time

April 15, 2021

Here are our introductory comments:

If you have a child with SYNGAP1 that is enrolled in the Ciitizen Digital Natural History Study, we are thrilled to let you know that we are doing our first study built on the Ciitizen platform. A company who has a product that may help our kids, and has shown promising results in another country, is looking to understand if they can do a study with the same product here. This study, the SSB30, will lay the foundation for this next study. Essentially we are asking you to do two surveys and keep a 30 day seizure diary. These results will stay in your Ciitizen account and you will receive a gift card for your participation. Please join us to learn about the study and get any questions answered.




0:04okay well hello everyone let me share my screen


0:24all right let me move this away so it’s a meeting so if you guys have any  questions at any time just interrupt me and  

0:38ask a question this is the goal is for everyone  to understand better what this study is about  

0:43and how to best participate so this study is  we’ve called it the sleep seizure behavior study  

0:52and that’s done partnership with Ciitizen  SRF and another pharma company that right now  

1:04does not wish to be announced but the  goal of the study is to really understand  

1:11the Syngap population and to inform future  clinical trials. So in this study we’re looking at  

1:20three major components of the Syngap population:  sleep challenges, seizures and behavior challenges.  

1:28So to participate you have to take three  surveys the first one is the behavior survey  

1:33the sleep survey those two you just take them once   and then you have the seizure tracker  and the seizure tracker needs to be taken  

1:4130 days consecutively and it’s just to get a big  picture of how it’s hard to know in one day how  

1:49the seizures are for your child so it’s just good  to see over time how it evolves over 30 days and  

1:57then for that every parent that participate  or caregiver that participated in the study  

2:03and completes all three surveys including the 30  days seizure tracker will get a $200 compensation.  

2:12Any questions on the general information  of the study what it’s about and how to

2:18participate i have a quick question  Virginie just out of comments on the  

2:27those of us that can can complete it and do have a

2:34earn the $200 is there any way we can have that  go directly to SRF or does it have to come to us  

2:40first? It will have to come to you first i believe  okay all right yeah and then you can donate okay  

2:50so who is eligible to participate we we sent a  mass email to everyone who’s on Ciitizen right now  

2:56that is that meet the criteria of the study which  means you have to be between 3 and 18 years old  

3:02your child has to be between 3 and 18 years old, has to have seizures and obviously a SYNGAP1  

3:10diagnosis. So if you haven’t received the email  i know some of i know for some of them i went to  

3:16spam you can still participate we posted the link  you can contact me directly virginie @ citizen.com  

3:24and i’ll be able to give you send you the  direct links to the surveys and i’ll send out a  

3:30email to everyone on the list again who have not  started their survey they’re surveyed but they are  

3:36eligible in the next few days so look out for an  email if you are eligible how to participate so  

3:45we talked about it before three surveys so it’s  very simple the first two only take a few minutes  

3:51the seizure tracker is really quick to fill  out but it has it has to be filled out every day  

3:56so right now we’re just gonna go look at  each one of them so this sleep survey it’s  

4:04fairly straightforward the date completed it’s  for the date obviously the the day you fill it  

4:09out your information patience date of birth  and then you have 26 questions about this  

4:15the sleep patterns of your child the first  two are different format which is like how many  

4:23hours average hours a night of sleep and then  how long after falling asleep does how long does  

4:31it take to fall asleep and then all the other  questions it’s a scale it’s a scale from never  

4:38from one to five never occasionally sometimes  often and always so all of the questions have  

4:43the same format i think the questions are  pretty straightforward and easy to understand  

4:49again it doesn’t take a  lot a lot of time to fill out   for some of you i know several of you have  been i’ve filled those out do you have any  

4:57questions or comments on on the seat on the  sleep survey was that pretty easy to fill out

5:08i am the sleep survey was easy to fill out  oh sorry i have a comment on the next survey  

5:13the the daily seizure tracker okay okay  we’ll do yeah we’ll go over that one as well  

5:20so then the second survey is the behavior  survey and there’s no order on how to take  

5:25those surveys you can start with a seizure  tracker then do the behavior then the the sleep  

5:32there’s you just take whatever you which  whichever you want first there’s no logical  

5:38order so the behavior survey that one is more  of a open question so it’s trying to understand  

5:48what are the major behavioral emotional and  social challenges that your Syngap child  

5:56and you as a family are facing and so  it’s just it asks you to give five examples  

6:04and then just write and describe as much  as you can so again fairly straightforward  

6:12just five examples the most challenging  behaviors emotional social challenges

6:22and you can write as much as you want  one thing that i would suggest and we’ll  

6:27de-identify everything but as you’re typing  try to avoid mentioning your child by name  

6:36by first name we’ll go over and and remove  anything that could identify your child  

6:41but it’s always good if you’re typing to  try to be conscious about not typing a name  

6:49any questions on the behavior behavior survey

6:57no all right does seizure tracker that’s the big  one it’s fast to fill out but it’s the one that  

7:04thing where most people where people have the most  questions so they want this one needs to be it’s a  

7:09daily seizure tracker it needs to be filled out  every day for 30 days if you skip a day you’ll  

7:16get an email from me to remind you to do it and  so it’s the same just fill out information  

7:24what i recommend is date completed please take  use that as the date that you’re reporting on so  

7:33i skipped mine last night even though i reminded  everyone i forgot to do mine so today i will  

7:42go back in and fill out four yesterday and so i’m  going to enter yesterday’s date so this is if you  

7:50can use this date for the day that you’re  reporting on that would be really helpful  

7:56and we can track we have a mechanism to track what  day you’re taking it so we know that you’re taking   it the next day but just use that date  uh to tell us what that you’re reporting on  

8:09and then information and then tell  us what type of day was it a good day   normal or bad then it asks you okay if it  was a good day you didn’t see any seizure  

8:19under identify trigger just list others that  that’s that’s a required field so just put others  

8:26if it was a bad day or a normal day and you  still saw seizures and you you have an idea   of what the triggers are please list them but  you can also use the other field to explain  

8:39as much as you want about that specific day why  you think that day was good bad or normal  

8:47so it’s always good to enter  whatever information you want there   and then was rescue med used or not this is  not a question about do you have rescue meds  

8:59it’s a question did you use it  that specific day to stop seizures

9:05and then other information if you want to  add anything anything that you want to  

9:12to list in there any other information  you you feel is important is relevant to   the seizures you saw that day and then the  next important things is trying to count so  

9:23over the next 30 days once you start  taking your survey you really want to   try to know if you can count as close as you can  for each seizure type so we’ve listed the seizure  

9:37types they’re in order of what we usually see the  most in the syngap community mike put out that  

9:44survey on on the groups which helped us kind of  organize the seizure types on the on the form  

9:51but it also has a description so if you’re not  sure what seizure type your child has number one  

9:57is i would go to the neurologist and ask and  they should be able to tell you and then and  

10:04then just use those descriptions to see which one  fits the most and then in those boxes all you have  

10:11to do is enter a number and try to be as specific  as you can if you’re giving a range which because  

10:17i know for some of the seizures it’s hard to track  um just if you’re giving a range try to make it  

10:23you know if you’re giving a range 10 to 20  that’s a pretty wide range it’s like double  

10:30right so try to say is it closer to  10 or is it closer to 20 in the

10:40in here too so if you’re saying let’s say well  today i saw an average of 10 seizures per hour  

10:48we’re really looking at the count for the day  so is it really every single hour of the day  

10:57is it a wake day are you seeing those at  night as well so try to get like the most   estimate you can for the entire day  in terms of the number of seizures  

11:06and i know it’s hard because sometimes  you know when your child is at school   you know you’ll have to ask did they see any  seizures at school and and you’ll have to ask  

11:14them to count as well so that we have the most  accurate count for for that specific day

11:22and that’s it so it really doesn’t  take long once you get used to that survey  

11:29and once you know the type of  seizure your child has it’s pretty   it’s pretty straightforward do we have  any questions on the process with a  

11:38seizure tracker before we kind of go over each  seizure type i have a question this is ashley  

11:46so i have a number of caregivers like his  therapist and his teachers who help me track  

11:51his data and give me lots of feedback about you  know what their observations of his behavior is   drowsiness talkativeness things like that  but sometimes i don’t get them for a couple  

12:01of days after especially his therapist will  usually do them once at the end of the week   so i’ve noticed like i you know during the  few days that i’ve done it during the week  

12:11this week i’ve i’ve only really had my data and  i know that it is incomplete and by the end of  

12:18the week i’ll have a more accurate reflection so  i remember you said maybe i think i saw it in  

12:23a facebook thread you can go through and re-enter  information for a day that so what we can do is  

12:32like we can coordinate and i can go back to  that specific day and then we can edit together  

12:39okay with notes so we’ll add a note that if  this was edited once we got the feedback from the  

12:45caregivers okay if for the next 30 days and i know  that’s kind of hard but if they could just report  

12:52on on that date just for the seizures they don’t  have to report on everything else but at least   on the count of the seizure that would definitely  be more helpful and that way when you at the end  

13:02of each day you’ll be able to to fill that out  and if it’s not possible then we you and i can  

13:08coordinate how to keep updating your surveys  to to keep the most accurate and i would enter  

13:15i would enter it so maybe you you log yours  when what you saw and then we’ll just do another  

13:23one with what the caregivers for the same day and  then we will combine okay wouldn’t an appropriate  

13:30alternative be maybe just lag a couple of days  behind until i get their feedback and then like  

13:37today i could enter monday’s information with  you know once i know that everybody has told me   is that would that be an appropriate accounting  of a 30 days it’s appropriate as long as we  

13:47know that you’re really keeping everyone  is keeping track and you’re not taking it  

13:52five days later trying to remember yes five days  ago so as long as everything is being is you’re  

13:58keeping track of everything then we’re good what  we don’t want is approximate information based on  

14:04memory from days ago completely understandable  thank you so much yep absolutely

14:12well that actually kind of plays into my  question hi this is alexis i i don’t  

14:19watch her all day long so if i know the  types of activities she’s engaged in  

14:24and i know maybe how many seizures per hour  she would normally have should i estimate at   the end of the day this is how many i suspect  she’s had or put the number that i actually saw  

14:35you could put two the two i would put the two  numbers okay and just in there just said okay we  

14:46you know this is how many i saw but  based on what i know of my child and  

14:52the train you know just say this is what i  estimate she really had okay thank you yeah

15:03any other questions for those who’ve taken that  and you can start one thing that i i forgot to  

15:09mention so this study closes on may 30th um so may  1st is your last day to start the seizure tracker  

15:21and we really want 30 consecutive days so um you  have until may 1st to start if you haven’t started  

15:28it yet but after that you won’t be eligible to  for the study because we really need that much  

15:35data for the seizures and you’ll get reminders  go ahead mike sorry sorry you know because it’s  

15:46all in the family here i realized i didn’t really  kick it off and i and hearing you chat i i just  

15:52want to contextualize a little bit for people i  think most people on the call understand this but   we’re in a really good i think situation  in terms of like it all feels like oh it’s  

16:04it’s Virginie but we’re very lucky that like  Virginie is a Syngap expert right she’s a mom  

16:09and then she’s been involved in advocacy for  years and obviously the director of SRF and then   we’re so lucky that she joined Ciitizen but i don’t  know how many months ago feels like forever and so  

16:22while we’re just sitting here entering in data and  like we’re chatting with Virginie it’s important   to know what’s going on in the back end virginia  and the company are having pretty regular meetings  

16:32going over this data and and doing quality control  this isn’t like we’re not jumping through a hoop  

16:38here right they’re not collecting the data  to check a box they’re collecting the data   to really study Syngap and to understand  how to design a trial for a potential product  

16:49so like this isn’t like a bunch of rules that  were these aren’t rules for the sake of it these   are this is guidance that we’re getting in order  to really ascertain what is what is it that we  

16:59would measure in a subsequent trial it’s a it’s  a highly collaborative learning process where  

17:06on the on the other side of these questionnaires  Virginie’s having almost daily meetings with  the company to look at this these data and to  discuss it and Virginie will correct me on that  

17:16so but we should take full advantage of  the good fortune of having Virginie there  

17:22and if you guys have questions or comments or  thoughts or whatever like virginie @ citizen.com  

17:27just go for it because the point of this exercise  is really to help a company design a trial and  

17:34then Virginie in after that little soliloquy can  you also explain where the data is going to reside  

17:40and and how this data will be useful to  ourselves and others over time right so um  

17:47one of the reason why we opened that study only  for Ciitizen participants is because not only the  

17:54the company is going to look at what you’re  reporting but they’re also going to look at   your Ciitizen data what’s in your medical records  and so that way they will get the really big the  

18:03full picture and all those items that they’re  looking at the sleep behaviors and seizures  

18:09they’ll be able to look at the medication they’ll  be able to look at all the doctors notes et cetera  

18:16and the those surveys the answers of those  surveys are going into the Ciitizen databank  

18:21meaning it’s available for that format company  that is behind that study but it’s also going to  

18:26be available for any other researcher that needs  that information so this is this is exciting  

18:33uh we’re getting more and more i  guess richer data on on Syngap patients  

18:41and like mike said it’s  this this is to help inform   and build a clinical trial for specific drug  for Syngap and i would say there’s also  

18:54another fold to that collecting that data getting  all that information is is very important but i  

19:01think for us as a community and that’s me as  a Syngap mom or Syngap director talking it’s  

19:10very important to show that the Syngap community  can be engaged and activated meaning that  

19:19if we if we have a pharma company or if we have  a trial coming in that we are able to act to  

19:27access families and families will respond to  those questions so it’s making us even more  

19:35appealing right now we have 26 people who’ve  already signed up for this study not everyone  

19:42has done all the surveys and everyone has started  all the seizure tracker the goal was to reach a  

19:48minimum of 30 but they’re open to do more so the  more Syngap families that are on Ciitizen  

19:59can join and participate in that study the  richer the data the data bank is going to be  

20:05and then we’re going to get really good  reputation in the pharma world so  

20:12that’s that’s my little plug there Virginie  i haven’t been on social media the last few days  

20:17but did we like advertise this on social media  or did eligible participants just get an email  

20:24so eligible participants got an email and then  participants in Ciitizen should be on the SRF  

20:35Ciitizen facebook page and that’s where we posted  a lot of information okay and i’m gonna do another  

20:41push because i think some of those emails went  to spam uh so i’m gonna do a one-on-one reach  

20:48um probably starting early next week maybe over  the weekend um to each eligible participant that  

20:55have not signed up yet okay so would you like  would you want those of us who are on the call  

21:00to like put it out on our social media like our  personal pages or is that not appropriate since   there’s only the eligible there’s the eligibility  consideration yeah i think since there is eligible  

21:10i don’t know i’ll let mike um answer that i don’t  think it hurts to know that you participated  

21:17i think it’s always good to put it out there um  and it might motivate more people to join citizens  

21:25yeah um yeah so so i i mean a couple thoughts  right so sydney we have sort of gone slow on  

21:32this because the last day to start is virginia’s  saying you know may 1st i’m staying sometime in  

21:39april but basically if the survey closes on may  30th from my 30 consecutive days sometime in   april people should be should begin right so  we still have two weeks to enroll people and  

21:49the the eligible population we have you know 100  plus people signed up for citizen 90 plus of them  

21:55are pathogenic or likely pathogenic 80 plus of  them are eligible for this for this study um so  

22:02we basically invited and i’m not i’m not trying to  hide the numbers i’m just i don’t have the numbers   in front of me so we sent an email to 85  people yeah so i think what we’re going to do is  

22:13we’ve sent the email and we’ve had a great initial  response but the direct answer to your question is   two or two one we don’t we don’t think we’re  done yet we’re we love everyone’s help recruiting  

22:24right so we’re we still plan on doing some reach  out and i think having everyone who’s involved is  

22:29comfortable posting hey i just did the SSB study  it was interesting and excited about it whatever  

22:36sign up here you know or call Virginie just tag  her absolutely go for that because the worst that  

22:41could happen is somebody who’s not eligible  who hasn’t signed up for Ciitizen yet or who  

22:47doesn’t have seizures or doesn’t have a  pathogenic diagnosis takes a couple   of surveys and Virginie has to drop him a  note be like hey fyi you’re not eligible but  

22:57that that is not a big deal right we’re checking  the data i’m checking the data every single day  

23:03so i will flag if someone is not either is  non-ciitizen or is not eligible we’ll be able  

23:10to flag so that we don’t let someone take 30  days of surveys and then at the end say oh sorry  

23:16yeah okay no that’s good i just wanted  to make sure that like there was   it was cool to like promote it in some way  personally without it becoming like an issue in  

23:25some way for you so we’re good yep quick question  virginia this is olga sorry what who was  

23:33the actual sender because i did see it the other  day and now i can’t find it it’s Syngap research  

23:40just Syngap research okay and um that’s same gap  citizen research i’m sorry ciitizen research 

23:50another quick question on these seizure types this  particular portion of the survey is there any way  

23:59can we do it i haven’t tried or looked can we do  a print off of just that so i could like hand it  

24:05to his teacher and say yes yeah you can definitely  take that okay it’s not proprietary or anything  

24:12okay no no no you can print it and just like  um ashley was talking earlier is you can  

24:18definitely combine the data at the end of the  day and to have the most accurate information  

24:25i’m not finding it that’s bizarre okay it’s  it’s act the actual email says citizen research  

24:31i mean as a sender as the center yes okay  yeah i think some of them went to spam so  

24:38that’s why you’ll you’ll get a new email from  me next in the next couple days directly  

24:44but the the survey links are posted on the  SRF Ciitizen facebook group too okay i found  

24:54it it did come up okay great thank you absolutely  this is ashley again i have another question i was  

25:02surprised that i didn’t see on the um the seizure  tracker survey any information requesting like  

25:09whether or not your child is on medications  of any um of any sort so i’m wondering like  

25:14is there a reason why you don’t want that  information or should we include that maybe in   the others field so the reason you don’t need to  enter the information is because it is on citizen  

25:27so they will access all of that okay  so i probably also then need to like  

25:34extend some new information if we have some  medication changes then right correct yes okay  

25:43and really all you need to do is repo the records  right right sorry all you need to do actually is  

25:49have them update the record so you go into ciitizen  you go to your provider the hospital the doctor  

25:54and you say update and then citizen will gather  that and the ciitizen will anonymize it and then   virginia keeps saying you know the the the company  will get your ciitizen records and i just keep  

26:04wanting to add de-identify anonymized right so  they will they never see a patient’s name they  

26:11see some double you know identifier and then they  see your answers and then they see you know your  

26:18your history in a standard normalized way so  that and if you think about it not only is that  

26:23nice because we know they have accurate data  from your medical records but imagine all the   questions you would have you would be being  hit with if they weren’t getting that then we  

26:31would be like tell us all the drugs tell us the  seizure history tell us blah blah blah blah blah

26:39oh sorry i’m thinking specifically with our with  nathan’s situation like what we are tapering off  

26:45of one drug and tapering up on another i might  put in my other category you know how much he like  

26:52what the actual dosages were for things that are  changing that’s what i will do yeah i think that’s  

26:57that’s helpful to add um and it’s really like mike  said everything will be whatever we can pull from  

27:03your medical records we will um but if there  are things like that like the doctor might not  

27:11know exactly that specific day what those you  had of that and then that matches with those  

27:16seizures right so that would be helpful to track  in in there and add the notes and really those  

27:22under others there’s no limitation to what you  can put out there so any information you feel  

27:30is important and relevant to explain the day put  it in there um they don’t they if they don’t need  

27:37to use it and they don’t use it right uh i’m  always more as in in this case it’s it’s fine

27:46and i and i just want to interject one other  thing um and i apologize if i cut someone off   i’m not seeing the screen um all the links to all  the surveys are also in the newsletter that i sent  

27:56out this morning so and at the end of this call  we we will add short links to the surveys and uh  

28:02we’ll send those out and we’ll stick them on the  recording youtube as well so the the um they’re  

28:07easy to find and today’s newsletter might be the  simplest place to find them yeah i’ll show them  

28:16ashley’s question made me realize i have  a question so i’m in emmett citizen i up  

28:23like whenever i make a change to his seizure  tracker that i keep of him personally like i  

28:29keep track of all his med changes because there’s  so many of them i like every month or so go and  

28:36upload a new document of that in citizens so that  when i share his file you know the most recent   one is there will citizen actually pull that  information from my own personal file that isn’t  

28:48obviously a real medical record i will double  check i don’t think so okay but it’s cool that  

28:57it’s in there hey or should i not be putting stuff  in there that’s not like a real medical record  

29:02i mean it’s i i’ve done it too i’m guilty  of doing this just because it’s in one place  

29:08and then when i hit share then like you said  everything is shared so it’s fine yeah it’s fine  

29:16you can keep if it helps you in a way like when  you share with a new provider then just keep  

29:22doing it it’s not gonna hurt our team will know  quickly if it’s from a medical record if it’s  

29:29entered by a parent sounds good thanks yep

29:39all right any other questions

29:44all right should we go through  the different seizure types   i don’t know if the ones those  of you who’d taken the survey  

29:51if those were clear or if you felt like  we needed more information on those

30:02i think for the recording it’d be good if you just   walked through them look through  them yeah that’s what i thought  

30:09all right so the different seizure type that we  are collecting information on are the first and  

30:15like i said earlier they’ve been organized based  on the results of the little survey that mike did  

30:22within the community in terms of what are the  most common syngap seizures we didn’t want you   to have to scroll all the way down to find the  one that we all most of all most of us experience  

30:34so the first one is generalized  absence or atypical absence seizures  

30:39uh those are your what we call eye roll seizures  um they’re really quick um it seems like in a  

30:48singup community it’s mainly when our kids eat  um so that’s kind of that was the most common  

30:54those are just our what we call eye roll seizures  atonic seizures those are your full drops

31:02uh general generalized absence those are just   uh the typical absence seizure which is  kind of just what we call the steering spell

31:12and let me know if i’m going too fast um i lead  myocline myoclonia evolving to myoclonic atomic  

31:22this is really fun to say with when you’re  french anyway so these are the what we call  

31:31those viral seizures that then uh evolves in  head drops so it’s like eye rolls head drop

31:42myoclonic seizures those are brief muscle jerks  are twitching tonic seizures it’s sudden stiffness  

31:48or tension in the muscles so they get really  really tense and tight generalized tonic clonic  

31:55seizures those are what we usually call the grand  mal seizures so it’s full on dropped to the floor  

32:01lose consciousness and then jerking focal impaired  awareness seizures with or without motor features  

32:11so those last one to two minutes  with loss of awareness of surrounding   may experience slip smacking  picking at clothes or fumbling

32:21then we have focal aware seizures with motor  signs they last less than two minutes and may or  

32:27may not lose consciousness and generalize clonic  seizures jerking movement followed by stiffness of  

32:34stiffening of muscles focal to bilateral  tonic chronic seizures last one or three min  

32:42one to three minutes start suddenly with  confusion and movement can be strong or forceful  

32:47may start with a smell nausea or change  in sensation it may fall to the floor lose  

32:52consciousness and followed by jerking movements  um focal aware seizures excuse me with motor signs  

33:01may have loss of muscle tone jerking spasm on one  side of the body and then a cluster of epileptic  

33:08spasms spasm that occur in cluster every five  to ten seconds over a five to ten minute period  

33:16so these are all the seizures that we are  recording if you see something different  

33:22that you’re not sure what category to fit it in  please send that list to your neurologist and  

33:29and describe the seizure that you’re seeing and  see if they can tell you what which one it is

33:41all right any questions on the types  of seizures that we are recording  

33:46yeah this is cindy i have a question on that um i  guess in our case it could fall under um myoclonic  

33:56but a more descriptive term is photosensitive  because under that umbrella is the pattern induced  

34:03so do you want it to be that specific or do  you just want me to put it under myoclonic  

34:08i would put it under myoclonic but then under  uh triggers i would do that it’s an induced  

34:15uh pattern induced yeah sometimes there’s  not the myoclonic element though so but  

34:20i guess i’ll just make a note of that  yeah or make a note uh in the type of   seizure uh just make a note and then the  count and wall will adjust okay thanks  

34:35i know it’s hard like some of my one of my  when my son has like his really bad seizures  

34:42i still don’t know i went over that list obviously  countless of times and i’m still not quite sure  

34:49where where to fit it ends i have a note to the  neurologist because i’m like it’s it’s very i  

34:56don’t know yeah it’s very bizarre so it’s like  okay i i need someone to tell me exactly but i  

35:05think for some of the neurologists in some cases  it could probably be hard if they don’t see it so  

35:10um i’ll try to make a video but when those happen  i just usually don’t think about taking my phone  

35:17yeah or you don’t have time right like you have  there’s some there’s a crisis going on yeah  

35:23yeah but yeah it’s trying to be as as detailed as  you can that’s that’s really what we’re what we’re  

35:31trying to get here uh and what we’ll do because we  are looking and working closely on those answers  

35:37uh not like mike what mike said so before  i even share anything with um the company  

35:42we work with everything is de-identified and  i match the answers with your citizen unique  

35:50identifier that way everything is completely  de-identified and that’s why even in the others  

35:57on the seizure tracker or on your comments on  the behavior um try to avoid typing the name of  

36:04your child uh if it’s in there i will go ahead  and and black that out remove it to dentify it  

36:14but yeah so we going through those answers almost  daily and so it might be that the company will  

36:22look at one patient in particular and will ask for  a follow-up uh and so in that case i will reach  

36:30out to the caregiver and and ask for something  specific so let’s say if there’s something like a  

36:36big change from one day to the next like one day  there’s zero and the next is like 200 seizures  

36:42and there’s no information on what changed i’m  sure we’ll need i’ll need i’ll be asked to follow  

36:48up for more information so we’re really  trying to gather the best data we can here

37:01all right any more questions on  seizure tracker i’ll go back to my  

37:09slides um and i think we’ve covered all of  that uh in terms of the the tips so it’s  

37:17to take every day it’s 30 day consecutively and if  you stop or if there’s a time that you can’t do it  

37:26but you still take notes and you’ll be able to go  back to it please let me know just flag it to me  

37:31that you did capture the right information it’s  just you didn’t put it on there that way i know  

37:37when the dates are not matching that it’s  still accurate information it’s not from memory  

37:44um we talked about the seizure types and  contacting your neurologist if you’re not sure  

37:50be as precise as you can in terms of the  count enter as many as much information  

37:56as you can under the other and then like  we say if you skip a day you can take it  

38:02later on as long as you reference that day uh back  and you’ll get reminders from me so i’m gonna be  

38:08very annoying for the next 30 days to anyone who  starts this user tracker not only you’re going  

38:14to get a reminder to take it but if you skip i’m  going to send you an email and then i might come   back with questions so please be patient with  me it’s just so that we can get the best data  

38:25and then we are setting uh syngap successfully  for a clinical trial with that company

38:34all right um any anything else now’s the time to  ask more questions i will stop sharing my screen

38:50this is mike just in case there’s no more  questions i just want to say thank you   virginia i know this is now your day job  which is awesome but i also know you’re  

38:56working hard on this because it’s personal  so we’re glad we’re glad we have you and i  

39:02just want to remind everybody too that i can’t  we’re not quite at the point where we can talk  

39:07too much about the company but this company  chose to work with us on the recommendations   of a scientist in another country and like you  know all these it’s a very small world right  

39:17so the feedback about how this goes will will be  discussed so really what we’re doing right now is  

39:23forming a discussion between industry and research  on how to think about how to study our kids so  

39:30it’s it’s really cool and um just thank everybody  for doing it and for promoting it to your peers  

39:38because we you know the we’re all working hard on  these therapies but one of the killer questions  

39:43when i talk to any company is what are we going  to study right because we are heterogeneous and  

39:49is it seizures or is it behaviors even though  this is is uh even though this might feel like a  

39:56pretty simple set of surveys again because it’s  informed and paired with the citizen data it’s  

40:01still tackling one of the most important questions  we have as a community so i’m just grateful that  

40:07um virginia’s working on it and this company’s  supporting the work and that we have this platform   and i’m sure it’s going to get us farther down  the field so thanks uh virginia and everybody else  

40:19yep no it’s it’s an exciting  uh it’s definitely an exciting   study and i hope we get more participants  and i hope we get way over the 30 minimum um  

40:31so we can show that if if researchers need  something from the community we’re able to deliver

40:44all right well i think that’s uh that will be  it unless if anybody else has any questions just  

40:49let it let me know you can always reach out to me  virginia at citizen.com if you have any specific  

40:58question on a specific day or anything i’m very  i work really closely with a with a company  

41:05and i i will forward you not forward because they  can’t as they can get your information but i will  

41:12pass along the questions um and be able to to give  you answers on on how to approach each situation  

41:20so so yeah thank you all for participating if  you haven’t joined yet please do uh watch out  

41:26for an email from me and um we can get this done  may 30 may 30th we’ll be able to completely wrap  

41:34up that study and get exciting data so thank  you virginia that’s great yep thank you bye