Diabetes Deep Dives: Diabetes Research

0:00 foreign0:08 I'm so pleased that you are joining us0:10 today0:11 diabetes deep Dives is a series of0:14 videos designed to dive deeper and0:16 Beyond the surface of different areas of0:18 diabetes management we are exploring0:20 those burning questions that you may0:22 have by featuring Dynamic and engaging0:24 guests with knowledge or lived0:26 experience on the topic our goal is to0:29 share information in ways that will0:31 spark continued interest and learning0:33 and leave you with practical tips and0:35 tools that you can easily use we'll be0:37 dropping a new video every month so0:39 subscribe to our YouTube channel and0:41 click on the notification Bell to be0:43 notified about new content you can also0:45 check us out on social media to find out0:47 when the next one will be posted on our0:49 YouTube channel0:52 just a reminder that the information0:54 shared in these videos in no way0:56 replaces the advice and direction from0:58 your Healthcare team if you have1:00 questions about your care please speak1:02 to your health care provider and team to1:05 make sure that you are getting the best1:06 advice1:09 have you ever wondered about what goes1:11 into the research that informs the1:13 development of a new diabetes treatment1:15 or how new technology is tested for1:18 diabetes management1:19 are you interested in getting involved1:21 in the research process1:24 in this video we will explore the1:26 different ways of conducting research1:28 that contributes to helping us prevent1:30 treat and find a cure for diabetes as1:33 well as how people affected by diabetes1:35 can participate1:37 our guest speaker Dr Brandy Wicklow will1:40 share her knowledge about commonly used1:42 research models for diabetes research1:44 and the ways in which people affected by1:47 diabetes can get involved1:49 she'll also tell us a little bit about1:51 what to expect as a participant in a1:53 research study1:55 after watching this video we hope that1:57 you will be able to1:59 identify the different types of research2:01 models and the differences between them2:04 find the resources to learn more about2:06 the diabetes research projects happening2:08 in Canada and internationally2:11 understand what to expect and what your2:13 rights are if you participate in a2:15 research project2:17 and make an informed decision if you are2:20 thinking about getting involved in a2:21 diabetes research project2:24 Dr Wicklow is an associate professor in2:27 the department of Pediatrics and child2:29 health at the University of Manitoba and2:31 a clinical investigator at the2:33 Children's Hospital Research Institute2:34 of Manitoba2:36 Dr micklow's research is focused on the2:39 determinants of type 2 diabetes and its2:41 renal complications in children with a2:43 particular interest in the Indigenous2:45 population of Northern Manitoba2:49 we hope that you will find this video2:50 informative and that it will spark your2:52 interest in learning more about diabetes2:55 research and about getting involved and2:57 now over to Dr Wicklow3:00 researching clinical trials is the basis3:03 of everything we know about diabetes3:05 that's how we learn how to diagnose3:07 diabetes how to screen for diabetes and3:09 its complications how to treat and3:12 manage blood sugars and how to prevent3:14 complications3:16 and support people living well with3:18 diabetes as a physician all of the3:20 clinical practice guidelines that I3:22 follow in my clinical practice3:24 are informed by this clinical research3:28 just like there are many different types3:31 of diabetes in many different3:32 populations of people affected by3:34 diabetes so the research is quite Broad3:37 in this area3:41 researchers cover anything from what are3:44 the most important and relevant3:46 questions to people living with diabetes3:49 how do we support people in terms of3:51 their mental health their nutrition and3:54 their physical activity when living with3:56 diabetes3:57 how to prevent diabetes4:00 and perhaps most importantly to those4:02 living with diabetes how to find a cure4:07 because all of these questions are very4:09 different and very important there are a4:12 multitude of different studies and4:14 different study types that someone4:16 living with diabetes can get involved4:18 with we're going to go through a few of4:20 those today on this deep dive looking at4:23 Clinical Research in diabetes4:25 when people think about research and4:28 specifically Research into diabetes they4:30 often think about two things4:32 the research that's looking into a cure4:34 and the research to prevent diabetes4:39 many of these research trials are4:41 clinical trials and often the randomized4:44 clinical trials4:46 a randomized clinical trial is a4:48 clinical trial that looks at a new4:51 medication4:52 a new preventative measure4:56 a new treatment for prevention of4:58 complications5:00 a new way to monitor or screen and it5:04 Compares these new Innovations to common5:07 practice5:09 or the current standard of clinical5:11 practice that you would experience when5:12 you go to see your doctor on a regular5:14 basis5:16 these new treatments or therapies have5:19 often been trialed in cellular models or5:22 animal models and at some point those5:24 same therapies need to be trod and5:26 humans with diabetes so that we can5:30 ensure that they're safe they're5:32 tolerable and they're efficacious or5:35 they work well5:37 oftentimes these types of Trials are5:39 what we call randomized randomization is5:43 really just like a flip of the coin5:45 if you're enrolled in a trial and you're5:48 going to be randomized what that means5:51 is you are going to be randomly selected5:54 to be either in the treatment group5:56 trying the brand new drug the brand new5:59 method of dosing the brand new way of6:03 screening6:04 and if you are randomized into the6:06 control group you'll be getting your6:09 usual Care by your usual clinician6:12 through usual means6:15 occasionally control groups will also6:17 experience additional testing screening6:20 or questionnaires that are given to the6:23 group that is receiving the intervention6:25 in order to compare things like6:28 vulnerability side effects quality of6:31 life6:33 these trials are incredibly important6:36 and they're a way to get a new6:38 medication such as empathoglobin6:42 closed-loop insulin pump system6:45 from Discovery and development6:49 to the market6:51 and only when these types of research6:53 Studies have shown that a medication or6:57 an innovation is safe is effective and7:01 oftentimes it's Superior to what we7:04 currently have and can recommend for7:05 people living with diabetes will it be7:08 made available through Health Canada for7:10 all people with living living with7:12 diabetes to be able to use7:15 prevention trials are often similar the7:18 randomized trials but they're performed7:21 in a population of people who have not7:23 yet developed diabetes or who have not7:27 yet developed complications of diabetes7:30 and these new Innovative treatments are7:33 used to prevent the develop or7:36 development or progression of diabetes7:38 in a population7:41 this is the discovery of insulin in7:43 Toronto over a hundred years ago7:45 Canadian researchers have been at the7:47 Forefront of many of these research7:49 projects7:50 often centers throughout Canada are7:53 recruiting people with diabetes to7:55 participate in these International7:56 research studies looking at new7:59 medications to prevent or treat Type 18:03 Diabetes Type 2 diabetes gestational8:06 diabetes or other types of diabetes8:09 in addition to randomized control trials8:12 there are several other types of8:13 research that you can get involved in8:16 some of these different types of8:17 research studies include focus groups8:19 observational trials and occasionally8:22 it's just a single sample of blood in8:25 order for fundamental scientists who do8:27 cell cellular modeling or stem cell8:29 therapy to look at potentials for8:32 prevention or a cure8:34 focus groups are often just that they're8:38 groups of individuals with lived8:39 experience8:41 with either Type 1 Diabetes Type 28:43 diabetes gestational diabetes or other8:47 they're asked a set of questions to8:49 inform what is the priority for research8:52 for people living with diabetes what are8:54 the important and relevant questions to8:57 you to your loved ones and to other8:59 families living and or affected by9:02 diabetes9:04 often these priority setting exercises9:06 are the basis of some of the largest9:09 networks of research there are in Canada9:11 including9:13 the patient-oriented research networks9:16 uh diabetes action Canada and cancel CKD9:21 for more about those two organizations9:23 in a minute9:25 personal interviews focus groups or9:29 questionnaires that look at how one9:32 lives with diabetes9:34 what's a barrier to living well with9:36 diabetes9:37 what has been found to be supportive of9:40 living well with diabetes and where9:42 people find there's not enough advice or9:45 information9:46 these are the places where researchers9:48 are going to focus their efforts in the9:51 future9:53 currently research at sites across9:55 Canada are looking at what's important9:58 to people living with diabetes in the10:01 research Realm10:03 how do we deliver care in the best10:05 possible way10:06 how do we screen for and prevent10:08 complications of diabetes10:11 how do we transfer transition patients10:14 from a pediatric diabetes Clinic to an10:16 adult diabetes clinic in the safe and10:19 most effective way10:21 researchers are looking to partner with10:24 persons affected or living with diabetes10:26 and their families or caregivers in10:29 order to do important and relevant10:31 research to those who are affected by10:34 diabetes10:36 as I mentioned previously there are10:38 several organizations which have10:40 information for patients and families10:42 which outlines some of the different10:45 projects that are happening in Canada10:47 and how you might be able to get10:48 involved one of those is diabetes action10:52 Canada10:54 if you Google diabetes action Canada10:56 you'll come to a face page which10:58 includes an area for patients or persons11:02 living with diabetes it also includes an11:05 outline of all of the researchers in11:07 Canada who belong to the organization11:09 and some of the work that they are doing11:12 through diabetes action in Canada there11:15 is a project called connect 1D11:19 connect 1D Canada is an interface on the11:23 computer which allows patients and11:25 people living with diabetes to register11:28 online to be contacted or considered for11:31 different clinical trials or research11:34 programs that come up11:37 other websites with useful information11:39 to look at research being done in11:41 diabetes across Canada include diabetes11:44 Canada11:45 the juvenile diabetes Research11:47 Foundation or JDRF and can solve CKD11:51 which looks specifically at kidney11:54 outcomes of people living with diabetes11:57 in addition to these websites they're12:00 also International websites that outline12:03 some of the projects where Canadians are12:05 included12:07 this includes trial net12:09 trial net is a type 1 diabetes screening12:12 and prevention platform12:15 is looking specifically at the genetic12:17 risks of diabetes and also the12:20 environmental risks of diabetes12:24 trial net is an international research12:26 organization that runs prevention trials12:29 and diabetes and also screening for12:31 diabetes12:33 specific research projects include12:35 looking at the genetic basis and risk of12:37 diabetes early detection of diabetes in12:40 order to use preventative novel12:43 therapies to delay the onset of diabetes12:47 or prevent it altogether12:49 other research programs can be found on12:52 the government website called12:54 clinicaltrials.gov This is where12:56 clinical trials register all of their12:59 inclusion criteria exclusion criteria13:02 what the study questions are and who13:05 they're looking for in terms of13:06 participation13:07 oftentimes if you type in the search13:11 type 1 diabetes type 2 diabetes13:14 gestational diabetes or whatever it is13:18 that is relevant to you into the search13:20 box up top you will also allow you to13:23 search by country13:25 if there's a Canadian site that is13:27 recruiting for one of those studies that13:30 you are interested in there's often13:32 times a contact information at the13:34 bottom of the page which allows you to13:36 connect with the researchers directly13:39 finally there's your local Health Care13:42 practitioners13:43 often although as a physician myself I13:46 don't always know about every new13:48 clinical trial or every research project13:51 that's happening in Canada if there are13:54 specific ones that are of interest to13:56 you with respect to exercise and13:58 hypoglycemia closed loop insulin pump14:03 systems14:04 or mental health supports for diabetes14:07 distress or diabetes burnout I can often14:11 find those projects for you by using my14:14 own Connections in the field14:17 and now I know you're asking how can I14:19 get involved14:20 you can start by talking to your health14:22 care provider about what speaks to you14:25 what are the most important research14:27 questions that you think there are in14:29 the field of diabetes what's relevant to14:32 you and to your family14:34 then often your physician Allied Health14:37 care provider diabetes educator can lead14:40 you to a website like one of the ones we14:43 spoke of above which will allow you to14:45 see what current projects are happening14:47 within Canada North America or14:50 internationally14:53 often times with the help of your14:55 physician your diabetes educator or14:57 another Allied Health professional you15:00 will be able to get connected to the15:01 primary researcher of those projects to15:04 look to see if you're eligible to15:06 participate15:07 if you're deemed eligible to participate15:10 then there you go you've started your15:12 research Journey15:14 oftentimes I'm asked what about my15:17 privacy my confidentiality15:20 who's going to know that I'm15:21 participating in this trial who gets to15:24 look at my a1cs over time15:26 how many people are going to see what my15:29 BMI is over time or how much physical15:33 activity I do on a regular basis or what15:36 I eat15:38 all research projects are reviewed and15:41 overseen by an Institutional ethics15:43 review board the purpose of that board15:46 is to make sure that you're safe in a15:49 trial and also that your data is15:51 protected and it protects your privacy15:53 and confidentiality15:56 every trial that you enroll in will give15:59 you a unique study identification number16:02 most trials will not have any16:05 information about you including name16:07 address birth date attached to either16:11 your questionnaire answers your food16:15 Diaries your blood samples or your urine16:18 samples16:20 these are all what we call anonymized or16:23 given a code so that even if someone16:26 were to see the results of your blood16:28 test they would have no idea that they16:30 belong to you16:34 your rights as a patient are to expect16:37 that the researchers follow their16:40 institutional ethics review board16:42 suggestions in terms of privacy and16:45 confidentiality16:46 that they keep all of your data safe in16:49 a secure network that is not hackable by16:52 outside sources and as password16:54 protected16:55 that your data does not leave16:57 institutional software17:00 and is not placed on personal equipment17:03 it's not shared with other individuals17:06 in the researchers family or friends17:09 circle17:10 and it is specific to This research17:12 project17:14 and the data is anonymized for analysis17:18 your data is often kept for several17:21 years within a locked facility on a17:25 secured17:27 computer hard drive within an17:30 institution just in case there are17:32 questions about data quality the data17:36 analysis or the outcomes of the data17:39 when the study or trial is ended17:42 after that mandatory period of time on17:46 which the files are capped they will be17:48 destroyed entirely17:50 or in some cases if the data is capped17:53 anonymized17:55 each individual who signs consent to17:58 belong to that study will be informed18:01 and consented again if that data is to18:04 be used for any other future analyzes18:06 that were not outlined in the original18:08 consent the risks of being involved in a18:11 clinical trial really depend on the type18:13 of trial that you get yourself involved18:15 with18:16 some clinical studies that are looking18:18 at priority setting what are the most18:21 relevant questions to people living with18:23 diabetes to inform what researchers18:25 actually research18:27 to how does mental health support or18:32 exercise advice or nutrition advice18:36 impact the lives of people with diabetes18:39 and finally there are clinical trials18:42 that are looking at novel medications or18:46 new ways to give insulin therapy18:50 in terms of management or prevention of18:53 diabetes18:56 in the former often those studies18:59 involve focus groups or interviews some19:02 questionnaires sometimes observational19:05 or longitudinal follow-up of blood work19:07 or19:09 complication screening19:12 there's often little risk associated19:14 with these types of studies as there's19:17 no novel intervention or drug being19:19 introduced19:22 when getting involved in a treatment19:24 trial then there is the possibility that19:27 you'll be randomized to a drug that19:30 currently either isn't licensed or isn't19:32 standard of care for people who are19:34 living with diabetes19:36 with that consumerous that the newer19:39 type of drug or medication either will19:42 have a side effect that you don't19:44 tolerate or perhaps won't work as well19:47 in you with respect to glycemic19:50 management19:51 complication management or prevention of19:54 complications19:56 oftentimes the risks that are associated19:59 with clinical trials that are trying new20:01 medications uh or new technology these20:07 risks are decreased because these have20:09 been either tried in a population20:11 without diabetes prior to being tried in20:15 a larger population of people with20:16 diabetes or they've been tried in other20:19 animal models in terms of safety and20:23 efficacy20:25 oftentimes the trial methodology20:28 includes very close follow-up more20:32 frequent blood work and more frequent20:34 contact with your physician or the study20:36 physician to ensure that you are safe20:39 that you are tolerating the intervention20:42 or the new treatment and that things are20:44 going well for you within the study20:46 trial as always if you're not doing well20:50 in the study the medication doesn't20:52 appear to be working or you're having20:54 significant side effects you might be20:56 withdrawn from The Trial by the study20:58 doctor who doesn't think it's in your21:00 best interest or you're always able to21:03 withdraw yourself from any clinical21:05 trial at any time21:07 if you decide to stop participation in21:10 any trial that's okay you'll still get21:14 clinical Care by your clinical team it21:16 won't impact how your doctors care for21:19 you it also doesn't impact whether or21:21 not you will be eligible to participate21:24 in a trial in the future21:26 as a physician at a clinical researcher21:28 I can tell you that we understand that21:31 participating in a clinical trial at any21:33 given time isn't the right thing for21:36 everybody and sometimes even though you21:38 start a clinical trial it doesn't21:41 benefit you to continue21:43 and perhaps in the future there will be21:45 a better clinical trial for you21:48 during a clinical trial it's difficult21:50 to give feedback on the trial design or21:56 the child protocol meaning what you have21:58 to do during the trial22:01 um in terms of changing the trial22:04 protocol22:06 oftentimes clinical trials have very22:09 standard and set protocols that every22:12 participating site follows across Canada22:15 North America or internationally22:18 depending on where the trial is being22:21 rolled out22:22 so often if you don't think that the22:25 visits are timed right or that you22:29 should be answering that many22:30 questionnaires there's often not an22:33 option at that point to make a change to22:36 that clinical trial however22:38 researchers are always looking for input22:42 of people who are participants in their22:44 trials on people with lived experience22:46 in order to make these trials uh more22:49 approachable for participation to make22:52 it easier and less burdensome on people22:55 who have agreed to participate in these22:57 trials and also23:00 to inform how to make future clinical23:02 trials better for people living with23:04 diabetes23:06 oftentimes researchers are looking for23:09 participants in their trial to help them23:11 decide whether or not what happens in a23:14 clinical trial is actually possible or23:16 it can be translated into real life and23:19 real day-to-day living and this is23:21 important because once a new treatment23:24 or a new motive therapy or a new23:27 screening protocol is put into place23:29 then it will become a standard of23:31 practice with the expectation that this23:34 will be useful and non-burdensome to23:37 people living with diabetes23:39 sometimes at the end of the trial or23:42 near the end of the trial the23:44 researchers will have an exit interview23:45 this is one of the formal ways to give23:47 feedback with respect to your experience23:49 in the trial what measures you thought23:52 were most important what measures you23:55 thought were more or less relevant to23:58 you and your lived experience all of24:00 these things are incredibly important to24:03 designing the next clinical trial24:06 if there isn't a formal exit interview24:09 or way to provide feedback you're always24:12 welcome to provide feedback by asking to24:14 speak to this study principal24:16 investigator or a member of the research24:19 team24:21 you won't always know of the feedback24:23 you get give gets incorporated into the24:25 next clinical trial or is incorporated24:29 into the next trial of that same24:31 medication with a different population24:33 you can always ask for feedback you can24:36 go on24:37 clinicaltrials.gov to look up the24:40 clinical trial that you were a part of24:41 oftentimes that will show you the24:43 preliminary results or the results of24:46 the study thus far that you participated24:48 in it often will also show you the edits24:51 or changes that are made to the protocol24:53 of research which oftentimes people24:57 living with diabetes have informed24:59 finally if you're interested in clinical25:02 trials and you want to get involved25:04 please reach out to any of the25:07 organizations that I discussed earlier25:09 to your local health care provider25:12 to the group of diabetes act in Canada25:14 or diabetes Canada25:17 there is so much incredible research25:19 that's going on right now with Canadian25:22 researchers here locally nationally and25:26 internationally that you could be a part25:28 of I hope you found this helpful25:31 thank you so much for joining us to dive25:33 deeper into diabetes research and how25:35 people affected by diabetes can25:37 participate and contribute to this very25:39 important work25:41 please take the opportunity to let us25:43 know what you learned what you liked and25:45 how we can do better25:47 you can do that by posting a comment in25:49 the comment section below or by clicking25:51 the link to the feedback survey in the25:53 description box25:54 if you have ideas for other topics you'd25:57 like to learn more about you can include25:58 that in the comments or feedback survey26:01 as well26:02 you will find the website links to the26:04 organizations that Dr Wicklow mentions26:07 in the video in the description box as26:09 well as some additional helpful26:11 resources on this topic from diabetes26:13 Canada26:14 if you are looking for more resources26:16 about diabetes management please visit26:18 our website at diabetes.ca you can also26:22 email us at info diabetes.ca or call our26:26 info line at 1-800-banting that's26:31 1-800-226-8464 and speak to one of our26:33 information and support Specialists who26:36 can address your needs thanks again for26:38 joining us and see you next time26:40 thank you26:43 [Music]