#51: What is the Parkinson's Progression Marker Initiative (PPMI) and what are we learning?

hi and welcome back to the secret life of Parkinson's I'm Jessica krauser and unfortunately I am not here with Brian Baker yet again Brian is actually at the Cleveland Clinic this week getting some clinical trials done for his DBS so interestingly enough we already had scheduled for our podcast to talk to somebody from the Cleveland Clinic who is a clinical research coordinator so I'd like to welcome Jennifer Jennifer molay did I get your last name right you got it perfectly thank you so much for having me oh thank you so much for coming on so um so yeah I thought it was Brian was originally supposed to be here but I you know I don't think he had his priorities straight in terms of what he was supposed to do first but um so he signed up for I think he was asked to do a clinical trial um he didn't know exactly what it was for but it was because he's had DBS done um so is that like there's got to be a ton of studies going on is that right there are quite a few studies for Parkinson's and DBS yeah um they could be very long and detailed or they could be quick questionnaire studies um so I hope that he has a good visit and um comes back and has good things to report about his experience at the Cleveland Clinic great yeah so Brian when you're watching this come back home safe safely and soon but today we're actually going to talk to Jennifer um about the ppmi study which we have brought up before and just quickly to say it again not I have in episodes before ppmi is a Parkinson's progression markers initiative and it's uh is it called led by or originated by the Michael J fox Foundation correct uh right or run by run yeah run by but so um so they are working with the Cleveland Clinic which is where you are the one in Cleveland um so we wanted to learn more about that because I think it's really important when I learned about this Study last year that it's not something that just Parkinson's patients can do but it's also everybody else can do it because of the ppmi study it's it's hopefully going to figure out what those biomarkers are so I wanted you to kind of at least start out with like what is ppmi going to do what is a biomarker what does that mean for um Parkinson's disease in general sure great well ppmi started in 2010 and the sponsor of the study is the Michael J fox foundation and their goal is to find a biomarker which is um like a biological characteristic in your body if you um say like diabetes has a biomarker for glucose level or your A1C heart disease and abnormal EKG or perhaps high cholesterol levels those could be indicators for heart diseases but Parkinson's doesn't have anything like that there's no magic uh answer to what is causing it how why do people get it how are you going to progress so the fox Foundation put together this really groundbreaking study 12 years ago and it's still chugging away today they started off just looking for early Parkinson's so if people who diagnosed with their PD for less than two years and they didn't hadn't started medication okay and they were also looking at some age and sex match sex matched healthy controls so folks that didn't have PD or any kind of neurological disease just healthies and they were going to compare their findings on those two groups and collect all kinds of data so it's interesting um so I'm in the pharmaceutical industry I work for a consulting company that works with Pharma companies who are launching their first drug and I know we're not talking about a drug but we talk about clinical trials all the time and I know all the different you know phases and how long things take but when you said 12 years I was like wow really like okay well it was supposed to be for five years but it was generating such a marvelous wealth of information um because it's a global it's a global study it's across 50 um sites and it's all across the United States from Massachusetts to California it's in the UK it's in many sites in Europe it's in um Lagos Nigeria there's a site in Tel Aviv so it's really Global and um there all these patients have Parkinson's all of the data is collected in the same way all the biological specimens are collected in the same way so it's a very pure data set and it's free it's for researchers that are um interested in doing uh Parkinson's research and the fox Foundation makes it available to researchers for free you just you apply say I I would like to have these samples here's my project and there they go they're off and running and there's been millions of downloads of the data and and clinical trials are now shaping their clinical trials Based on ppmi data so they are amazing are using ppmi data oh they're using it oh that's great okay I didn't know that so real quick let's back up and talk about the ppmi studies so the one that like I took it and it was an online you know questionnaire you just ask questions and you keep getting um going to the next one but is there something that you have that people come to and they do it live right so ppmi has really branched out when it first started it was a clinical trial where people would come to their particular site their hospital or academic center for their visits they'd have a screening visit make sure they meet the eligibility criteria to be in the study and then if they were eligible to be in the study they would come in for a visit a couple of months later we would collect biological specimens like blood urine spinal fluid um we would do brain Imaging with an MRI and some special nuclear medicine Imaging called a DAT spec scan yeah I had that done okay measures the area in your brain that makes your dopamine yeah and Parkinson's patients will show a diminished area shrinks a little bit and where in the healthy control it should be um you know not shrinking and then all kinds of questionnaires about mood and their activities of daily living um and a cognitive battery about 40 minutes worth of I'm going to give you a list of words and then you tell me as many as you can remember draw this shape repeat after me all kinds it's a long day it can it can go over multiple days and so the patients are going to come and do that and then they come periodically maybe every six months and once a year to repeat all of those same assessments again and all of that data is uploaded into Data databases and over the years and like I said it was supposed to be for six five years to start and they just um kept saying let's keep extending it and collecting info and you're still doing it that way yes yes I in the when it first started when rolling we started in 2011 at Cleveland Clinic and I've got about 22 or 23 patients that started then so they're in year 10 11 12 13 of the study um and they gotta love that it's amazing they they all they keep on coming I mean I would I know I've I did I did one of those cognitive um tests kind of like what you were saying with the um the questions or like draw this do you remember this so I did one of those because I just I'm like I had to know for myself like what I was struggling like I knew what I was struggling with but I needed those around me to know that it's okay that that's where things are headed but I'm like I would love to do that every year every other year just for myself to understand you know because sometimes we drive ourselves crazy with like are we feeling this way is this real is this just normal life is this because of Parkinson's so I'm sure a lot of the patients like to say Jen Jen can you look back how did I do last year yeah compared to what I did today yeah yeah it's just a naturally curious intuitive you want to know how you're doing yeah but that's not the only way that people can take the study right like because like I said I did one online so how how many like what is that how long has that been going on and how long are you guys gonna keep it going on um I call ppmi the study that will never die because it just keeps on going so I I can't say when it's going to be over but they did launch an an online initiative called PPM online and you can go to the Michael J fox website and and search that if you want to join and they are they're taking a lot thousands many thousands of people are able to join that study and it's they're collecting things like questionnaires and um and they do it at periodic intervals maybe every three months you would get a set of questionnaires and you're uploading so a great way to follow Parkinson's patients and healthy controls and family members of patients with Parkinson's so um who's eligible healthy healthy men right now from I'm age 30 to 80. and Parkinson's patients and the early Parkinson's patients um folks that maybe have a risk factor for Parkinson's which means maybe you've lost your sense of smell you're over the age of 60 could be a little bit of a risk factor maybe you have a rem Behavior sleep disorder called RBD this is when you're acting out your dreams in your sleep folks with a round Behavior sleep disorder have an elevated risk of a neurological degenerative disorder no did you guys learn that like that did you guys learn that because of this study yes yeah we did that was uh one of the things that that they added um maybe several years into the study they saw this trend so they're like let's look at folks that are prodromal that means they don't have a disease but they have a risk factor to go on to develop the disease they're not it's not certain that they're going to yeah so they have a risk factor so let's try and capture them too just follow them and see if they get Parkinson's while we're collecting all the same data across the board yeah so um and then folks can help out with online questionnaires too and um and then people also with certain genetic variants are also eligible to be in ppmi that's really interesting that like you know you talk about the risk factors and um you know initially my mind was going across of like would I would I want to know but if you have the gene you don't know until you get that tested so that's that's one thing but if you're acting out your dreams and you find out that you could have a higher likelihood to develop Parkinson's you know at first it's like okay is that how is that weigh on somebody but then again sodas all the different um risk factors that people might have for heart disease or for diabetes and so then they're taught or you learn what to do to hopefully mitigate that disease whereas so one of the go ahead one of the findings in ppmi for you're talking about mitigation exercise we've found out that folks who exercise blowing Maybe slowing the progression their symptoms um you know kind of quiet down a little bit after they exercise maybe their thinking is a little more clear after they exercise so um get on that bike and ride or jog or on your elliptical whatever you can do to get your heart rate up it's great great medicine for the body and I think that's that's a key Point too it's it's not just getting steps in it's getting your heart rate up which makes the difference um and so that we've talked about it plenty on this podcast of how important exercise is and in your heart rate and you know strengthening your muscles overall but well what else has come from ppmi um so I was just reading that a team in Pittsburgh they found impulse control disorders are can be common in Parkinson's in particular with certain medications that treat PD yeah so they um um paired up with 23andMe and they found some links so maybe they can guide Parkinson's patients away from certain medications that can trigger these impulse control disorders like gambling or overeating things like that and get a treatment that's not as risky that's great that's actually that's really great and for those for people who don't have Parkinson's or who haven't dealt with those medications I have a a group of of women that were all young onset and across the United States we just all found each other in you know different ways from social media but um there's 16 of us and uh like there's I think one one of the women said she didn't have that impulse control issue on the the drug but the rest of us all did and some of us were like you know worked for a while but then it you keep increasing the medication and it just you don't hit that side effect until later um but that would have been fantastic to know if you know what they studied or what they're learned that okay my body might not do well with that type of drug so just eliminate it all together because it was a really bad experience and I mean people that go on that drug sometimes they they gamble away you know like a patient who gambled away an entire savings account yeah and people could identify what it was oh and it's it's it's it's crazy and you think you can control it and you want to control it but it's it's a you know it's a medication in your that's a physiological process it's not willpower um what else I I have has anything come out of getting a true like is there going to be a true biomarker I guess when I was originally thinking of this I was thinking there's going to be like one thing that would say uh the million dollar question I don't believe there's going to be one biomarker but you know I don't know the future it what we have learned is that Parkinson's a very heterogeneous disease it doesn't look the same in each person even in the same person on a different day oh trust me it looked totally different yeah so it's real it's um so hard to try and um you know figure out a global solution or Target for a moving Target this disease that looks so different across the board some people have a Tremor some people have the Frozen gait you know some people don't even look like they have Parkinson's disease but they're just moving a little slower so um I think we're gonna have we're gonna get the answer in small steps yeah we're going to find something that works for a certain subgroup of Parkinson's patients like maybe the folks that have a Tremor and don't have a lot of freezing of gait we're going to find out you know a good treatment for that or find out something for folks that do have the freezing of gait but maybe it won't work for the folks that are Tremor predominant so yeah I think it's going to be like that but you know I'm I'm a scientist I'm not a medical doctor I'm just a little biologist here that has a passion for for sniffing out answers and eating my head against the wall from all the failing the clinical trials but we're going to get there yeah you guys are doing so much this I do have one more question before we close out um because somebody actually asked this we get a lot of questions through the podcast like in our comments and I thought maybe this the ppmi study would be able to answer or put something towards this so you were mentioning um somebody has a Tremor and and this maybe we can treat them this way or if they have you know start bucketing people do you think or is there hope that we will get to a day where um you know right now everybody's you just fall in the bucket of Parkinson's disease um similar not similar but at some point way back when there was probably it was just cancer you know but now there's breast cancer there's colon cancer the pink you're you know like all the different kinds do you think we will get to or is that what people are striving for to get a type of Parkinson's so it's better treated I don't know if we're striving for a type but I think that that's what the data's starting to reveal okay that maybe it's not just this one big umbrella disease yeah but it's yeah in buckets or in subgroups um I I wouldn't be surprised if that's what it comes to in the future interesting okay very good well thank you again so much to find out yeah I would love to have you on again if you'd like you know sometime this year because it's just great to know you know the things that you guys are finding out or you know once things are published or posted like you said that in Pittsburgh what they're doing if if you want to send any of those along once they're public knowledge I'd love to I like reading that stuff oh sure my pleasure thank you so much for having me well in our last 30 seconds I'll leave you all with this if you've learned anything from this podcast episode please go online and sign up for the ppmi study it's something you could do as a questionnaire whether you have Parkinson's or not and continue to give data so that these researchers can do what they do best and hopefully find a cure one day for Parkinson's so Jennifer thank you again so much and we'll see you guys all next time thank you [Music] foreign

Channel: The Secret Life of Parkinson's

Views: 3,676

Keywords: parkinson's, pd, parkinson's awareness, parkinson's disease, young onset parkinson's, yopd, ppmi, parkinson's progressive marker initiative, mjff, michael j fox foundation, Cleveland clinic

Id: PT0n6yAJnjo

Length: 18min 14sec (1094 seconds)

Published: Thu Feb 23 2023