A new test may identify ALS up to a decade before symptoms appear, research by Alex Pantelyat, a movement disorders expert at Johns Hopkins, and colleagues has shown. Pantelyat says there are certain groups of people who may benefit from testing.
Pantelyat: As with all complex diseases it's genetic, gene environment interplay that we haven't fully unraveled. People who have known environmental exposures particularly to these mitochondrial toxins that are in all manner of pesticides, that would make sense for them to be screened, especially if there's a family history of some neurodegenerative disease. That's why we need a commercially, CLIA lab approved panel that's easy enough for a neurologist or maybe even a primary care clinician at some point to order if there is a suspicion of this kind of illness.             :33
CLIA lab certification is a rigorous process to ensure strict testing standards. At Johns Hopkins, I’m Elizabeth Tracey.

Testing hundreds of blood samples collected years ago allowed researchers at Johns Hopkins and elsewhere to create a panel of proteins that point to the develop of ALS, or Lou Gehrig’s disease, up to 10 years later. Alex Pantelyat, a movement disorders expert at Hopkins, explains.
Pantelyat: Specific proteins were found to be different for patients with Lou Gehrig's disease than in healthy controls or those with other diseases up to 10 years before the clinical symptoms of ALS manifested. That involved examining the samples collected from people who did and did not have ALS. A proportion of those patients later developed symptoms of ALS and thus were clinically diagnosed. That's how looking backwards using the samples that were collected during the asymptomatic period of ALS our team was able to come to this conclusion.            :33
Pantelyat says the good news is the technology is currently available. At Johns Hopkins, I’m Elizabeth Tracey.

ALS is a diagnosis no one wants to hear. Also known as Lou Gehrig’s disease, the condition robs a person of the ability to control their muscles, and eventually their breathing. Now a new blood test developed and tested by Johns Hopkins movement disorders expert Alex Pantelyat and colleagues can spot ALS years before symptoms begin.
Pantelyat: This is a project that took many years to complete because it involved gathering samples from patients with ALS, Lou Gehrig's disease and other neurodegenerative conditions from multiple countries. Our team was able to find a protein signature and reliably tell apart between Lou Gehrig's disease and healthy individuals as well as those with neurodegenerative conditions that may have some overlap with ALS in terms of how they present.          :32
Pantelyat says this recognition should point the way to interventions to help. At Johns Hopkins, I’m Elizabeth Tracey.

A smartphone app helped people with prediabetes improve their lifestyles as much as a human led diabetes prevention program, research from Nas Mathioudakis, a diabetes expert at Johns Hopkins, and colleagues has shown. Mathioudakis says future plans to let the app use ‘generative AI’ to personalize responses for users needs scrutiny.
Mathioudakis: If we're going to use gen AI how do we ensure that there are guardrails and that the information provided is evidence based? One approach is to really train it on a corpus of medical literature that is evidence based, nutrition and physical activity guidance, to limit it to that. Some strategies that have been thrown out are using AI to check AI so you have these like filters of AI verifiers. Third is clinician auditing of prompts and text.   :28
Mathioudakis predicts some combination of these strategies will be needed so that apps provide both best advice and best strategies for health. At Johns Hopkins, I’m Elizabeth Tracey.

Prediabetes can be controlled with multiple lifestyle interventions to avoid development of diabetes, and an app helps. That’s according to research by Nas Mathioudakis, a diabetes expert at Johns Hopkins, and colleagues. Mathioudakis says the results are consistent with that seen with other such interventions.
Mathioudakis: Patient facing interventions with AI technology, in general the literature showing that patients are slow to accept AI based interventions for various conditions. We did find that some people reacted negatively to the kind of canned messages that were coming out. It started feeling a little formulaic. Push notifications can work for some people up to a certain point and then they can become bothersome. Mainly that was the feedback we got from our participants is it doesn't feel personalized.     :30
Mathioudakis says the next version of the app will use so called generative AI to further personalize messaging and hopefully compare favorably with a human coach. At Johns Hopkins, I’m Elizabeth Tracey.

Using a number of AI driven prompts, a new app helped people with prediabetes make  several lifestyle changes to improve their blood sugar. The app was developed by diabetes expert Nas Mathioudakis and colleagues at Johns Hopkins, and compares favorably with a diabetes prevention program or DPP developed by the CDC.
Mathioudakis: This is not a one-size-fits-all. Some people absolutely loved the program they were assigned, others hated it and wished they had gotten the other version. A couple things that we noticed in this trial was this sort of the level of engagement was substantially higher with the AIDPP. It was a lot easier to start it faster. We mail them a digital health kit, they got the app, they were able to start it within just 11 days versus the human group you had to wait for a cohort to form in your area and often that was like a three week lag.   :31
Mathioudakis hopes to improve on the app by making it even more personalized and adaptive to emulate a human coach. At Johns Hopkins, I’m Elizabeth Tracey.

Prediabetes can be controlled and diabetes avoided with use of an AI driven app, a new study by Nas Mathioudakis, a diabetes expert at Johns Hopkins, and colleagues has shown. The app performed just as well as human led coaching as part of a diabetes prevention program, originally developed by the CDC.
Mathioudakis: I think that the next level of this personally is a combination of reinforcement learning plus generative AI to emulate human coaching because there was a finite number of prompts that could be given through the app and it sort of starts to feel a little automated and people can tell that this is not a coach. But this AI technology has advanced so rapidly in the last five years that the prompts could essentially emulate a human coach and you might be more responsive if it sounds like a human being.          :31
Mathioudakis says even more personal and adaptive messaging may motivate people to make the range of choices needed to keep diabetes at bay. At Johns Hopkins, I’m Elizabeth Tracey.

An AI driven app helped people with prediabetes avoid development of diabetes as well as human-led coaching, a study by Johns Hopkins diabetes expert Nas Mathiodakis and colleagues has shown. 
Mathioudakis :The app was using built in inputs of the smartphone, so geolocation, accelerometer, you can tell where you are if you're moving. It was connected to a digital scale to check on weight and there was this built in photo based meal detection. If it gave a nudge that you're free right now, the weather's nice, you've got 30 minutes between now and your next meeting, why don't you take a walk to Starbucks and you actually did act on that, that's a win for the algorithm and it's like OK that type of nudge worked. But if it did give you that nudge and nothing happened well maybe that's not the right approach for you.  :34
Mathioudakis says the app was modeled on diabetes prevention programs developed by the CDC and shown to be effective, but not easy to access. At Johns Hopkins, I’m Elizabeth Tracey.

Diabetes is known to cause increased risk for cardiovascular disease and many other health issues, so if you’ve been told you have prediabetes it’s important to stave off frank diabetes. Nas Mathioudakis, a diabetes expert at Johns Hopkins and one developer of an app that helps do just that, says monitoring blood sugar is foundational.
Mathioudakis :The A1C level for prediabetes is from 5.7 to 6.4. Six point five is diabetes. We know that the higher the A1C is within that range the more likely someone will be to have progressed towards diabetes, so that's 6 to 6.4 is higher risk. In general I would recommend at least annually for people that have pre diabetes guidelines say that you can check less frequently if it's stable and on the lower end, but if there's been a change in weight, lifestyle, less physical activity it's worth just checking in to see where you are.   :31
A1C levels reflect an average blood sugar over the previous two or three months. At Johns Hopkins, I’m Elizabeth Tracey.

Prediabetes is a condition where your blood sugar is higher than it should be, but not high enough to be called diabetes, and if you’ve been told you have it you can take steps to avoid transitioning to diabetes. That’s what Nas Mathioudakis, a diabetes expert at Johns Hopkins, and colleagues were trying to do with an AI driven app to help people make lifestyle changes like weight loss, emulating a formal diabetes prevention program or DPP. 
Mathioudakis: Diet is also super important. I will say in overall when you look at the outcomes the biggest driver of course is weight loss but the DPP showed that people who follow a healthy diet, and of course the science has changed from that original trial, but low carb, Mediterranean, even ketogenic diet has shown evidence for benefits. So independent of weight loss and independent of physical activity people who follow a healthy diet can improve their glycemic control.    :26
Mathiodakis says avoiding the many complications of diabetes is the goal. At Johns Hopkins, I’m Elizabeth Tracey.

People who have prediabetes frequently go on to develop diabetes, but diabetes prevention programs or DPPs can help. Nas Mathioudakis, a diabetes expert at Johns Hopkins and one developer of an AI based DPP, explains what’s at stake.
Nestoras Mathioudakis: Studies show that about 20 to 50% of people with prediabetes will go on to develop diabetes within the next five years. We're talking about 38% of the general population is almost 100 million and if even 20% of those go on to develop diabetes we're talking about a pretty big problem. The reality is that fewer than 1% of people with prediabetes ever participate in a DPP.    :23
Mathioudakis notes that weight loss is the number one strategy.
Nestoras Mathioudakis: Weight and obesity of course cause insulin resistance which is what's causing the prediabetes and weight loss is the single most effective way to reverse prediabetes.             :13
At Johns Hopkins, I’m Elizabeth Tracey.

Diabetes prevention programs or DPPs were developed by the CDC over a decade ago to help people with prediabetes avoid frank development of diabetes, but very few people access them. Nas Mathioudakis, a diabetes expert at Johns Hopkins and one developer of a new AI based DPP shown to be just as effective as those conducted by people, explains why.
Nestoras Mathioudakis: The CDC developed the national DPP in 2012 based off of this landmark diabetes prevention program but there have been so many barriers to translating the evidence of that original trial at scale. First there are just too few programs. There's one program per 63,000 US adults with prediabetes. There are a lot of scheduling constraints, we've got busy middle-aged and older adults with their lives fitting in a 12 month lifestyle change program that meets weekly is really challenging.     :29
Mathioudakis says avoiding the development of diabetes also staves off severe consequences of the condition like cardiovascular disease. At Johns Hopkins, I’m Elizabeth Tracey.

For people with the condition called prediabetes, prevention to full blown diabetes is key. Over a decade ago the CDC developed diabetes prevention programs or DPPs to help but very few people access them. Now a new AI based DPP developed by Nas Mathioudakis, a diabetes expert at Johns Hopkins, and colleagues, may help.
Nestoras Mathioudakis:  This is to our knowledge the first randomized controlled trial to demonstrate that a fully automated AI based diabetes prevention program can help individuals with pre diabetes lower their risk of diabetes at a same, sort of the same level as a traditional human coach led diabetes prevention program.  And so that's a CDC recognized DPP. The study was designed for non inferiority and about 32% in both groups met the 12 month outcome.   :28
Mathioudakis notes that the AI based program develops personalized messaging to help people achieve their goals in preventing diabetes. At Johns Hopkins, I’m Elizabeth Tracey.

Have you heard of ultrasensitive genetic testing for cancer? This method produces a very detailed characterization of someone’s tumor, and William Nelson, director of the Kimmel Cancer Center at Johns Hopkins, says it then may be used for subsequent decision making regarding treatment.
Nelson: The ideal notion is that you undergo surgery, maybe you get tested the next day you can still see some of the circulating DNA that it progressively goes away to an undetectable level. Are these tests sensitive enough, does that mean you can avoid adjuvant chemotherapy after colorectal cancer surgery? Similarly if you did avoid it and at some point in the future you could detect it again, it popped back up, could you use the same adjuvant therapy? This would suggest you might need it, could you use it? Would it be as effective from that scenario as it would have been earlier on.       :31
Most such testing is now under the auspices of clinical trials but Nelson expects it to be more broadly available soon. At Johns Hopkins, I’m Elizabeth Tracey.

The genetic makeup of a cancer is quite different than that of the person who has it, and now new efforts to very specifically characterize the cancer are poised to have surveillance and treatment implications. That’s according to Kimmel Cancer Center director William Nelson at Johns Hopkins.
Nelson: There are a number of companies building individualized DNA tests for cancer that are so-called ultrasensitive tests. They survey the entire genome, there's thousands of base changes in cancers, acquired mutations. And so they'll use this to build a test that has many shots on goal if you will to detect the cancer DNA and then use it after surgery in looking at the circulating cell free DNA.     :28 
Nelson says having a detailed cancer map enables surveillance of the blood for DNA that matches the cancer, and may be an indication of early recurrence that can then be treated. He notes that many of these tests are being performed right now as part of clinical trials. At Johns Hopkins, I’m Elizabeth Tracey.

Obtaining human organs for transplantation is largely managed by UNOS, the United Network for Organ Sharing, and it’s a not for profit enterprise. Yet Adam Schiavi, a neuro critical care expert at Johns Hopkins, says if current political forces have their way, a for profit concern may soon take over. 
Schiavi: It's a popular way of doing business, it's a popular way of doing politics these days. If people continue to not pay attention and misinformation continues to be the order of the day and be the narrative I think it's more likely than not that it will come into something that we are not OK with, and then it's going to be really hard to ratchet that back from a public democracy point of view, which is slow incremental change on purpose through consensus. And I think probably the fact that whatever corporation turns out to be the one who can profit from this is going to start screaming that their rights are being infringed upon and their right to make profit.                            :34
At Johns Hopkins, I’m Elizabeth Tracey.

Does the organ transplantation system in the US need reform? That’s the agenda of a disgruntled family member whose relative waited years for a transplant, in testimony before Congress, but Adam Schiavi, a neuro critical care expert at Johns Hopkins, says it appears reform may transition our current not for profit system to one where profit is introduced, and that’s very concerning.
Schiavi: It's going to end up being corporations doing matching people presumably with the most money. They're going to pay the most for the organs and it's going to become an open market like a capitalism market, where supply and demand comes into play, an organ that comes up that meets the requirements of a person who is on the list, the person with the most money can pay the most for that organ. If it's scarce it's gonna go up in price. That leads to unbelievable disparities of income and any number of things.   :27
Schiavi urges everyone who finds this idea unacceptable to pay attention to this issue and voice their opposition to lawmakers. At Johns Hopkins, I’m Elizabeth Tracey.

UNOS, the United Network for Organ Sharing, oversees much of the organ transplantation taking place in the United States, and how it manages this is currently under attack, with some proponents arguing that the system should be replaced by one with a profit motive. Johns Hopkins neuro critical care expert Adam Schiavi says while the system may look unwieldy from the outside, it’s really biology that determines who gets scarce organs.
Schiavi: Even though they're the highest person on the list doesn't mean that they're going to get the first available organs. They're going to get the first available organs that meet their profile and that makes it incredibly complex and complicated which requires a huge system of people and organization that is altruistically motivated. It's in the public domain, it's UNOS, it's part of HHS and these are all non for profit. Nobody's making money on this stuff, they're just trying to do the best that they possibly can all things considered.  :29
Schiavi hopes public awareness will keep the system equitable. At Johns Hopkins, I’m Elizabeth Tracey.

When it comes to organ transplantation one size does not fit all. A multitude of factors determine whether a given organ is right for a certain recipient, with at least one disgruntled family member challenging the system in Congress and elsewhere. Adam Schiavi, a neuro critical care expert at Johns Hopkins, says in the short term organ pairing systems will likely stay in place.
Schiavi: I feel like until the system is dismantled the pairing and the matching system would probably stay about the same for a while because there's not a viable alternative at the moment. There's tons of people donating organs and they have to go to the proper people. It's not always the ones who need them the most. That's what we want to believe, the person at the top of the list gets the first organ available. It doesn't work that way. That would be ideal, we want that to happen but the person over on the other side on the donation side their organs may not be a match, they may not fit.   :32
At Johns Hopkins, I’m Elizabeth Tracey.

Is five years unacceptably long to wait on a transplant list for a donor heart? The son of a recipient thinks so, and is attempting to radically change our national organ transplant system.  Johns Hopkins neuro critical care expert Adam Schiavi says testimony before Congress and other strategies have already had an impact on organ procurement organizations, or OPOs.
Schiavi: OPO's have actually been forced into changing their metrics and it's more about how many transplants are done. If they don't meet a metric then they risk being decertified. That would have like 75% of the 55 or 56 OPOs in the country, 75% of them just vanishing, which would essentially dismantle the program. And then the following year it would be another 25% and then you're down to only just a handful.  :27
Schiavi says the fiendish complexity of organ donation and the host of ethical issues surrounding it accounts for what can look like massive delays for those waiting for organs, but it has been thoughtfully created and should not be replaced by a for profit system. At Johns Hopkins, I’m Elizabeth Tracey.