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and good afternoon this is Cynthia Kannagi with the ALS Association thanks so much for carving time out of your day to join us today's webinar is one of a series of webinars designed to bring information of a practical nature to people living with ALS we're so pleased today to be able to share some valuable new information with you dr. Jill yerzok is our senior director of Mission strategy dr. your six PhD prepares a PhD prepared scientist her focus is on cell biology genetics and neuroscience with her is dr. Sarah Covanta dr. Pavan tan holds and masters of Public Health and a PhD focused on communications today they are going to be sharing information about a brand new program titled ALS focus dr. I believe you are photos on the call one comment regarding housekeeping everyone attending is on mute mode because of the background noise but if you have any questions or comments please don't hesitate to submit them in the chat box and we will entertain those at the end of the presentation during the Q&A dr. your sick doctor for vodka hi everyone good afternoon this is dr. Julia our sec as Cynthia thank you for introduction we're really happy to be here today both Sarah and I are is willing to take turns present to the slides is to to make a little more fun and break it up a little bit I'm Sarah I've been working on this ALS focused survey platform to the last almost almost a year now and we are very excited to start rolling out this survey program and give you more information today and we're happy to take questions at the end so Sarah do you want to get to get us started today sure yes thank you everybody it's great to be here and we're really happy to be able to talk to you about ALS focus today so as both Jill and Cynthia mentioned ALS focus is a new online survey program that's free and open to the entire ALS community and we can talk to you about why this makes it unique and a useful platform for people including people on this call so first off I just want to tell you a little bit about what ALS focused actually is it's a survey program and it uses data from these surveys to improve drug development clinical trial design clinical care home health and other sorts of issues and priorities that people with ALS and their caregivers have the survey data comes from participant responses to the surveys and these participants are people with ALS and caregivers both current and past caregivers and so the the surveys that these participants will respond to ask questions about the symptoms burdens and everyday impacts that ALS has on their lives so this survey is really concerned with quality of life and how that relates to other kinds of outcomes in addition including health history and medical kinds of outcomes but this survey is asking more about quality of life experiences and the survey itself is housed in an online portal so that people can complete the survey online and and that way it can have a lot of reach across the United States and we're going to be developing surveys about four times per year each of the surveys will cover a different topic and we'll talk more about how those topics are chosen you go take care so we've been working like I said we've been working on jail so this program for about a year now and it's been my pleasure really privileged to be working with people day less and in a chair givers to help develop the survey platform on the slide our chairs of our patient caregiver Advisory Committee who've been step by step helping me and Sara really design the survey pick the survey topics they're involved in testing and just just really every step of the way it is it involved and their feedback has been instrumental to really move this program forward we want to make sure our goal at the Association is to make this survey program as easy as possible to participate in and that's and for you as participants to really get value out of the survey program and understand why it's unique from a lot of other survey programs they're out there as one of the things they have emphasizing is that they're constantly getting bombarded by surveys or questionnaires at the clinic and at home and what we wanted to do is make this survey program Aziz's to participate as possible and so we'll give you more information on this but general Loretta from New Jersey he's been living with ALS testing for about six years now and I've known John really just right after his diagnosis is just a phenomenal person and his wife and they actually live close to me and work from home out of my home office in New Jersey can mank house is a native of North Carolina and he's our other co-chair he's a professor I think of economics and he's been instrumental in helping us design these surveys he has a lot of background in surveys and also of carries a PhD and works for Davidson College in North Carolina so real pleasure to work with our co-chairs and and they under them we have been working with a group of patients from all over the country that are care staff care leads staff across our chapter networks on reconcile II recommended to us to participate it's been a lot of fun so there do you want to continue next slide yes great so like Joe was saying we have a group of people that have helped us identify topics for these surveys and and so the survey topics and the questions themselves reflect the priorities of people in the ALS community and and by doing so our aim is for these surveys to be relevant to a lot of different people so that we can generate a lot of participation and therefore make the results even more useful so here are some reasons to participate in ALS focus first of all the survey data that we'll collect will be collected specifically for the purpose of impacting decisions of key ALS opinion leaders including advocates people who work in advocacy and people who develop policy and work in our policymakers in the government so that's the data aren't just for to look at in terms of the fact that we're interested it's actually to create action the data from these surveys will help shape public policy inform the way that clinical trials are designed and also inform care services so that those services and programs are strengthened for people who are living with ALS participating with ALS focus brings hopefully in this way brings the needs and the perspective of the people who are actually impacted by ALS both those with the disease and their caregivers bringing their perspective to the center of treatment and policy decisions moving forward so it's really trying to put a magnifying glass on the quality of life issues that people are dealing with and creating policy and programming clinical trial design to improve those quality of life aspects that are so important and Joe the life there said you know in order to make a difference and to to make changes people need data right we need data too even if things are intuitive about the everyday currents of people with ALS and their challenges people need the policymakers in the government or people who decide who run these big programs need to see data to show that there is a burden there that has statistical significance and has been run through a larger group of people so that's really of the huge purpose of ALS focus and so you know that really lends to show that there is a current gap in research and experiencing the views and preferences and and the me is in the cloud and understand the quality of life of people with ALS and their caregivers even though things we see people with ALS every day with through our clinics and there are care these across the country we need that data there's a lack of data actually show that there is a need in specific areas so what this is apart from most other all other surveys out there that I can tell is that every other day that we collect will be open and free to entirely less community and researchers all over the world but that means is we're not selling patient data or caregiver data to corporate industry partners we're not we're not going if anybody after a short and Barbeau period where we do an internal analysis all data will be stored on our data platforms which is called neuro Bank which is stored with our really great partners at Mass General Hospital and once cleaned the data will be cleaned any researcher or any person for that matter can go into neuro Bank and get it get the raw data to then do their own analyses and we're hoping that that people do that and there's a huge need so we're hoping to really create a really robust data set it's really interesting and I'm excited about is that based on your demographic information that people fill out we can look at results by the first three digits of your zip code so we don't know where you live but we have an idea the region where you live and if you can understand specific needs and burdens in different regions of the country that's really important really for our chapters across the country who are really on the front lines serving our people serving people ALS and caregivers so they can have an idea of in their region what what is the most what are the challenges in their region and how can they start addressing those challenges to meet the needs of the people in their area so it's really cool about this survey and we're really proud about the US Association it's not only the data straight open to the analyst community but they're able were able to really link survey data's other data that we've collected over the years and other ALS research sites so the use of a thing called a global unique identifier and the global unique identifier is kind of like this really long numerical string that is connected only to you and it makes your data de-identified and see and so a few other studies in really big studies have been using this global unique identifier that was really developed by again our partners at National Hospital at NC RI and at neuro Bank and some some examples of some other datasets has been using is that are the national analyst registry many clinical trials in the northeast ALS consortium network or the Neels network use the global unite that unique identifier so a lot of the studies that come out of Mass General are using these to go in and also natural history studies across the country that track people over time and even some of those big precision medicine programs that you hear about are probably participated in where they where researchers are collecting DNA to do large genome sequencing studies to identify new genes which then identify new therapeutic targeting genome sequencing is really just a way to sequence or read the whole genome in your body so really excited about this functionality and we're really proud of it and a leadership here the ALS Association I've are always talking to precision medicine programs and other research studies across the country to encourage them to use this good so we can continue to combine data instead of just keeping it in one area from where no one else can access it so what works are also happy about is that the participants can really use this hopefully it will enjoy taking surveys because once we're done after the survey closes participants will be able to check the results your results in comparison to other people's once the survey closes and personally and Sarah can well we've talked about this the greed is that it's more fun to take a survey and see your results versus someone else's and just taking a survey and then not knowing what the results are once the results are come out our compiled we will be putting out block reports on our ALS Association blog and we've also created a website for less focus the post results so you can check fast the show to understand what data we've been able to collect some people all across the country on different topics and Sarah will talk more about this and really this is just an opportunity to participate in research we know that clinical trials are difficult to get into for various reasons which I don't want to get into today but I think most of you know how difficult that can be so this is always it still participate in research and make a difference and help researchers really understand the burden and the challenges people with ALS have everyday and their caregivers okay next slide great so Jill about this a little bit just to provide some more clarity about how ALS focused compares and differs to other surveys that are out there because many people have taken online surveys before and so maybe the question will come up of why is this ALS focus survey different from other surveys I've participated in and will participating in focus provide new information or is it going to be redundant and so I think that we want to clarify the ALS focus is something very new and very different from the other survey programs that are out there we have the National ALS registry and this registry collects information on people's ALS history and looks for changes in disease patterns over time so it's more focused on the number of cases of ALS where those are and what the changes are across the disease spectrum as opposed to focusing on quality of life as a really important outcome and experience that that we need to prioritize for people with ALS and caregivers so the registry is covering a very important topic in terms of looking at ALS history and Natural History but the focus is also focusing on something new which is quality of life outcomes there there are Natural History studies as well and these studies as well as the ALS registry they use the global unique identifiers that jill referred to as goods and so we can actually take ALS focus responses and link those to these other surveys that have that use the global unique identifier and then you have you can basically um answer new research questions without having to collect that ALS history information twice because it's already somewhere else and so in a way this might reduce the number of surveys that people need to answer over time or the redundant information it can help to reduce that ALS focus is also different than some of the commercial ALS surveys that are out there in that the data that come from ALS focus are free and open to the entire community whereas in commercial surveys the data are private proprietary where someone needs to pay to use those data or isn't able to use those data at all so focus data we aren't keeping for ourselves we're going to make that open to the community so everyone can benefit from it and then I want to also talk about the first survey topics for ALS focus as I mentioned we're going to be creating new surveys about four times a year on different topics and we're about to launch the first survey for ALS focus within the next week or so this first survey is focused on insurance access and financial burden and this topic was selected by people with ALS and caregivers that we're working with as well as representatives from the pharmaceutical industry and government who also have a big kind of stake in creating improvements in ALS programs and clinical trials and policies so this is the first topic that that group prioritized and there will be many other topics to cover and they can also kind of follow what's most new and timely and important to people in the community this survey is going to ask about what types of insurance people would Iowa have over the course of their disease what are the cost of those plans and is the coverage adequate and then if there are programs or services that people need that they haven't been able to access due to lack of insurance coverage also we're going to ask about what it experiences people have with regard to maintaining or losing their health insurance coverage as well as some other questions on this particular topic and what we can do with the responses and the data from this survey is to draw some conclusions and insights about the insurance what are the insurance gaps that are out there and decide how we can help to fill those gaps through programming and policy change so as Jill mentioned the data from these surveys will be a good kind of concrete evidence when talking to advocacy groups people who provide care and policymakers to say this is what the data say and it's reflecting the responses from a lot of different people who are dealing with these issues so this is the type of data we should pay attention to thank you and then Joe though so we are we put together a really robust community engagement plan to to roll out a list focus Sarah so everyone enrolled us on the next week or so when the very final stages of testing we're so excited to get this out to everybody so we hope that you participate but we'll be sharing communication materials throughout ALS homepage at the ALS Association website and then our chapters across the country and Arkell and cotton clinics will start promoting the survey through different the Terra peed yet like worksheets that you could that you'll be able to have them brochures like fa Q's and one-pagers will be putting out social media post promote your blogs and email and we're hoping that our community will promote this among themselves and a friend share with their friends but also talk about it at wok different supporters I attend a local support group in my area periodically and try which I always enjoyed taking part of with them wonderful group of people in my area they know about this clinic symposiums conferences will be talking about these results at different conferences and I won't be surprised at a lot of the some of these results will be published in a peer-reviewed paper someday but we will be pushing out results before that things are officially published because publishing at a peer-reviewed journal takes a long time you want to make sure the information back to the public before that so we putting that information on our blog and for presentations and posters at different conferences and symposiums field to be kept up to date of where we are also our focus homepage will have to have a result session you'll be able to check back there to see what the results are for the previous surveys there's let's have a little bit more about IR P but essentially all of our material that we put out are approved by the IRB and is really important and it also sets us apart so to make sure that everything that we do is is okay to talk about to people with ALS in their caregivers so there we'll talk more about that next slide so almost have something to contribute here and I love stare - take over - but to speak for myself we're so excited and weren't your participation is so important we can't get enough data if you don't have high participation and we can't make a difference unless people participate and so like I said we need numbers and actual data to make a difference so spray the word it's really important and we really feel that the information from the surveys will really amplify the understanding of the needs and preferences and the opinions of people asking their caregivers to really make informed decisions on how to move to improve quality of life for people with ALS through establishing new programs and hopefully even changing policy so Sara do you want to continue yes so I think also just tied to this all of the communication materials and I'll go back to that slide then these materials that Jill mentioned we're making these available so that it is easy to tell someone else about the program and provide them with accurate information because we want everyone who comes in and participates to have a good sense for what this program is how the data will be used excuse me how their privacy will be protected and and then what we'll do with the results and that's why we submitted this study to an institutional review board that basically makes a determination about whether or not this type of survey presents undue burden or risk - to the people that we want to field the survey with and we received an approval from the institutional review board so it's kind of a reassurance that the questions we're going to be asking and the mode in which we're going to be asking those questions isn't going to create some sort of harm for the people who are participating so I encourage anyone who wants to talk to their friends or other people in their community about this these materials will be posted in tandem with the ALS focus the first launch of the first survey and so all of these will be available for people to use and have access to as I was Edmund yeah okay great yeah thanks sorry I probably shouldn't have gone backwards and because we have it here as well so I guess another reason that we encourage people to use the communication materials that we posted is because those have those materials in they do have IRB approval and so they're just like the most accurate set of information and so just an extra reason to take advantage of those being available the best place to point people to and to participate yourself the best starting point is the ALS focus webpage that will be launched in the next week or so in tandem with the first survey or think that saga to the end of our slides and Joey one zero stab yeah so I just I just wanted to quickly thank everybody if you have any questions please email self so get the alphabet national tour - national org it's always a pleasure to talk to you we knew that this would be a shorter webinar than usual but we wanted to be short and sweet and really understand really what we're doing we've been up to the last year so at the ALS Association working on this program it's been a pleasure work with people with ALS their caregivers on this and then also on I was able to hire Sarah who's also a seeker with me today is been a rock star so it's been really great or a human everyone and we really hope you'll participate but today we're happy and for questions if you have any their entirety thank you thank you so much again I apologize for the attendees joining us in mute mode however the background noise when so many people are on the webinar is just untenable but we do have a couple of questions one is how do I participate in this survey will it be on my chapter website so yes there'll be a button on the home page of our of the ALS Association national website and so which is also reflected on your on your chapter website so you will see an advertisement per se on your chapter website in the home page and that will link you to the LS focus web page so yes I did Daniel's our digital wizard and he will be replicating just on all the pages across our chapters Sergey I know Jamie asked that just that the registration for ALS focus being that the survey is on a survey portal I realize that's kind of jargony but it's basically its own a website that's being maintained by neuro Bank that the organization that Jill mentioned their housing all of the data because they do this with other kinds of clinical trial data they have the they have the apparatus and the set up available to be able to collect the data and make them make the data private and ensure participant privacy so there will be a link on the ALS focus webpage that says if you want to participate click here and then it will direct you to the ALS focus portal where you would then go through a few steps to register like create a username and password and then you'll have access to various questionnaires one being questions about demographics like what is your age and what is your living situation which are important for us to note could get a sense for the variety of people who participated in the survey and then there's a second questionnaire that reflects this first survey on insurance needs and financial burden great great thank you that actually leads up to another question if all this information is shared how is my personal identity protected so you're the your than all of that sort unless you want to go ahead yep well for the the data that we collect for the survey questions are not actually linked back to your name or like your medical information will have information about for example one of the questions is do you remember your ALS FRS score and people can say whether or not they remember it and if they do they can enter what the score was but that that particular response will not be tied to that person's name or address or anything like that when we generate the global unique identifier the the actual online system does ask questions like where were you born and what is your last name and that that information is just used to create the this unique ID that will be assigned for every person so that we then don't have to actually use and have that in the data set and once that unique identifier is created that information about a person name and where they grew up that's all it kind of disappears it's just you strictly to create this dis identifier that will be linked to everyone else's responses so we only know that participant a 9 6 8 5 3 gave a response to each of the survey question does that answer the query yes I think so thank you very much you know there's so many surveys outcome health related surveys and other surveys I know that there are quite a few questions people have about protecting their own privacy so thank you for going through that and another question that and catches a Dussehra like just just a for added comfort Sarah and the team at Nara banks have done this in the past they're really good they're really good they've been really really thoughtful that they will be unique identifiers and so the information you will be will be collected will be denied de-identified and your data will see your data and privacy will say state state I can't say this to work Thanks great now speaking of collecting information we had a comment from someone joining us here in it asked will you be able to supplement survey data with the considerable amount of insurance information that chapters already have on folks that they're serving that's a great question that's our hope you know so once we get to survey that we can sort the data by region and then that data can then be given to our chapters to want that information to to then take that information and combine it with all the information that we have in their area so we're really hoping decimals will add to the information they have locally to really make a difference to understand what are the insurance gaps and more than needs what services or equipment are not being covered in their area and then we can try to figure out also in a local level how we can make things better for people s people with ALS and her family so yes that data will be available to all the chapters and they'll be able to take that and run with it and really excited to see what everyone comes up with this is a collaborative effort that the chapters are well aware of through the chapter executive the communications the care of services people so everyone it's been in lockstep of how this is going to work and its capability so very excited to see what comes out of this for a survey bill I'll also just add that just in case I I think you answered the question that the the caller has but just in case the question is will chapters be able to see the survey responses for individual participants and link that up with their insurance at this point and unless the chapters at some point in the future start somehow what is it storing their data through a global unique identifier we wouldn't be able to link up individual responses but you can look at the information overall and that's what Joe was talking about where we're going to one of the questions asked for the first three digits of someone's zip code and so then we don't know exactly where they live but we know what region and so we would know what the average scores and responses were related to insurance needs and financial burden in a particular region and then a chapter can use that and look at their own insurance information and see how everything is lining up and you know kind of identify gaps and needs based on that thank you very distinction I see it I think that was clarifying one of huge features of the LS focus program is it is an IRB approved program so can you tell us just one more time why it's important for a survey or a research program to have IRB review and support yes that's a great question as a researcher because one that I value too so IRB is it's a reviewing body that is there to ensure participants aren't put at risk and at undue risk or in the cases of social science kinds of surveys like this one aren't put it risk at all and so risks are things like the questions make people really uncomfortable for one reason or another or that they're as people have been asking about importantly that their privacy of their information isn't somehow at risk in a way that would harm them so when you have an institutional review board it's with people with law degrees and they review a lot of different studies and they're able to say in this case of this study we you know this study is presenting very low risk to participants we're not collecting samples we're not collecting personal information and so basically and also the survey questions themselves aren't some designed in a way to make people uncomfortable and so they basically said yeah you can proceed as is we need to see all of your documentation as you go along and if at some point we think there's a red flag we're going to let you know but thus far everything has been totally fine and we're we're giving them all of the survey questions and everything like that so and I I think I'll also say that published research I guess I'm safe in saying pretty much always has to have been reviewed by an to tional review board if that research is based on data from what they call human subjects participants people so if a survey a doesn't have IRB approval that means that it can't be published and shared in a way that helps to enrich knowledge across the community it can be proprietary and commercial in some ways but it's not one that like will be utilized by researchers in the way that IRB approved to research is able to do and we've been extremely thorough even this presentation that was attribute href' right there yes it was thank you so much another question here based on some of the information shared earlier can the patient and their caregiver both participate and answer surveys individually yes I can answer that question that's a great question and I'm so glad that you asked it because it means we're putting together this portal correctly so how the portal is currently designed is that each kind of family or household can have one account and it can have multiple members and so those members can be a person with ALS a caregiver and and those are the two groups that we're currently including in the eligible sample for this survey so and if someone has multiple caregivers there can be multiple different caregiver members on an account so so there's no need I don't think it's actually a problem if a caregiver wants to have their own individual account and a person with ALS wants to have their own individual account but if it's easier just to get through the whole process to set up one account with one username and password and then each person in that family or household creates a different kind of a different user ID for themselves so they can just toggle between the different people that are all in the same the same family or I know a set of people that are working and living together and and caring for one another in that way great say that links the families together when you when you set up that way so we'll know that the person and the caregiver linked yes that is one benefit of having a person with ALS and their caregivers all under the same account is that eventually we may have some priorities and questions to start looking at linkages between people and their caregivers and what their experiences are and so having them under the same account will allow us to do that very good thank you thank you a question of the hour when does it start get there oh okay if we weren't pausing because we didn't know it was more we wanted to see what if the other person wanted to explain but anyway this is Sarah the we're in the process of testing the survey our aim is and I wish I had a specific date but we have to make sure everything works correctly so that someone's experience taking this survey isn't cumbersome and so I guess ideally I would say within the next week or either the end of this week or next week i for some reason there are kind of functionality issues the survey portal it would take longer but basically once we launch the survey it there will be a lot of information being disseminated through an e-newsletter through the ALS Association it will be posted on the CDC National ALS Registry email listserv social media posts will go out so if you're connected to those different outlets you're going to see information about it I wish I could say the survey is ready to go and we're launching at the end of the week but as these things go with lots of survey research we have to do testing with members of the community to make sure that that it's working right sorry I can't give a more definitive data wish I could we're close to very close the answer to that is yes but so another another question you mentioned earlier that there will be multiple surveys I believe you said there may be up to four surveys a year if someone signs up and participate in the ALS focus survey program will they be alerted when a new survey comes out yes and I actually will need to consult with our survey hosts at Mass General Hospital to get a better sense for how that alert system will work but my understanding is that it will be an email because when someone registers for ALS focus they their user ID is their email address and so basically when a new survey is available it will generate an email and send out a new survey is available log in to your ALS focus account to respond to the survey excellent something along those lines yes Tom well I know this is a brand-new program really built on a strong foundation in order to move the needle forward with respect to to the information and as dr. your 6th ed the data that needs to be collected in order to provide more optimal outcomes for people so thank you so much for sharing the overview of your new program our attendees are still unmuted but are there any other questions or comments please submit those in the chat box we've had some great questions and really hit it on quite a quite a few the highlight that you've already shared with us I do not see any additional comments coming in thank you so much for putting this email on the screen so if anyone has questions specifically about this program they can email ALS focus at ALS a - national org and someone will be getting back to them yes I that I will actually receive that email so I can help to respond to any additional questions that come up very good okay thank you so much and as you heard at the beginning of the presentation this entire webinar has been recorded for everyone's convenience so if there are other folks that were not able to join us at two o'clock Eastern time this Monday this webinar it will be posted on our national website and you're more than welcome to go back and listen to the entire webinar or view this slide deck that was associated with that one more quick review questions or comment with that then we thank everyone wishing everyone a safe afternoon and thank you for joining us today thank you everyone wonderful day thank you please stand by