Tag Archives: research

The Glu Real-World Research App is a finalist today.

May 9, 2014 – 9:07 am

Got anything on your plate today, say at 1:00 EDT in the USA? Are you a MyGlu member? If so, you might already know about this. If not, you probably want to log in and check this out.

I got a chance to chat by phone with Christine from T1D Exchange this week, and she filled me in on the details of a live streaming presentation being made today for (official title) Sanofi’s Partners in Patient Health and North America Research & Development Hub Innovation Challenge: Collaborate Innovate. T1D Exchange is a finalist for the $100,000 prize!

So… many of you are familiar with the T1D Exchange, an online database effort headquartered in Boston that gathers oodles of data from people with Type 1 diabetes. T1D Exchange also works with 73 clinics in the USA, covering 27,000 patients. In addition, part of T1D Exchange’s efforts is MyGlu, which is an “online community designed to accelerate research and amplify the collective voice of those living with T1D.” MyGlu has something approaching 10,000 members now, who share information and participate in data gathering in a huge way. To that end, they’ve been wanting to create an app (called the Glu Real-World Research App) that would make it easier for patients to participate in studies. Their presentation will be centered around that. In their own words:

”Our hope is to expand our already successful model to help mitigate the issues in R&D and accelerate progress for those living with T1D and, in the future, other disease groups.”

I was interested in the challenge, and what T1D Exchange and MyGlu hope to accomplish through all of this. So I asked some questions. Questions like:

How many competitors are you going up against on Friday?
There are four finalists that were selected from a large number of presentations. Since the finalists were announced, they’ve all been working with mentors assigned to help the teams develop their pitch in a clear, concise fashion designed to wow the judges. All of the teams will present via live streaming beginning Friday at 1:00 eastern time. The T1D Exchange presentation will be second. After that, from about 2:30 to 3:30, the judges will deliberate, and at 3:30 the winner will be announced.

Note: You can view the live streaming presentations at 1:00 today by going to www.collaborateinnovate.com. You can also follow @CollaboratePIPH on Twitter for updates throughout the course of the challenge.

What is the app about? What will it do?
The app will further T1D Exchange and MyGlu’s mission, connecting and supporting patients, and helping researchers and patients share information in a very easy way. Say, for instance, a researcher is doing a study that requires real-world responses from T1D patients that meet a certain criteria: pump users, CGM users, MDI patients, etc. Researchers would find those people from among those who’ve downloaded the Glu Real-World Research App and completed their profiles. This way, study organizers could more easily find study subjects, and potential study subjects could find researchers seeking the data these patients are uniquely qualified to deliver.

This is also a collaborative effort with others?
They’re partnering with MIT’s (Massachusetts Institute of Technology’s) H@acking Medicine in the design of this app, and they’re partnering with Joslin Diabetes Center in Boston. MIT obviously brings technical expertise to the table in areas such as rapid product design, lean start-up methodology, workflow re-engineering, novel data collection, big data analysis, and information publishing. And Joslin brings unparalleled knowledge and passion for researching diabetes and treating patients with diabetes.

You seem to have a pretty good idea of what you want. Let’s say you win. What happens next?
Should they win, they would immediately start sitting down with various stakeholders and subject matter experts to determine timelines and establish priorities. Then they’ll assign people to various aspects of the project, and keep track of specific milestones to make sure everything is going according to plan and budget.

Anything else you wish to tell us?
They’ve been wanting to develop an app like this for a long time. They’re thrilled to be a finalist for this award. They’re hoping everyone will watch!

Once again… You can watch the live streaming event at 1:00 EDT (US) today by going to www.collaborateinnovate.com, and you can follow the challenge via Twitter by following @CollaboratePIPH.

This is a wonderful opportunity to see what forward-thinkers in the diabetes world are working on. I hope you can make it! Don’t forget to share this with others.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (0)

People are talking: #JDRFSummit Part two.

March 4, 2014 – 9:48 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’ve broken it out into three days of posts. Yesterday, I covered the morning’s presentations. Today, I’ll cover the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

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As I said above, there were lots of presentations Saturday. Before the main talks of the afternoon, there was a passionate advocacy update from Cynthia Rice, Senior VP of Advocacy and Policy at JDRF. To this observer, it seems like JDRF is working hard to expand their advocacy. Children’s Congress, Promise meetings with legislators, multiple outreach efforts. JDRF is advocating for all of us living with diabetes. Want to get involved? It’s easier than ever. To sign up, visit the JDRF Advocacy website here. Also, you can get advocacy updates on your mobile phone by texting ACTION to 53731 (JDRF1). Simple, yes?

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After that was one of the best presentations of the day. Dr. Linda Gonder-Frederick, Clinical Director of the Behavioral Medicine Center, part of the University of Virginia Health System. In her talk, she looked at diabetes from a psychological perspective. I remembered meeting her in the course of one of my clinical trials last year. She seemed smart then, and smarter Saturday. A couple of the things she had to say:

“It is well documented that diabetes is the most difficult condition for patients to manage.”

“Think of diabetics like a snowflake… no two are the same.”

According to Dr. Gonder-Frederick, there are four coping strategies that serve PWDs well: Information gathering, problem solving, empowerment, healthy acceptance, dealing with negative emotions, and social support and appropriate help seeking. It’s not a surprise that rates of depression in people with diabetes is almost twice that among non-PWDs. Critical periods for psychosocial risk in PWDs include diagnosis, any time there’s a real change in care or treatment, and the transition from a pediatric medical support system to adult medical support. In fact, she told us that this is the time when most patients get lost in the system. The transition from pediatric to adult care is that hard sometimes.

Honestly, I’m not doing her talk any justice. If you get a chance to hear Dr. Gonder-Frederick speak, I highly recommend it.

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The next two presentations were very scientific, and to tell you the truth, there was a lot of information given in a short amount of time. Let me see if I can give you the highlights from talks by Dr. Eugene Brandon of Viacyte, and Dr. Stephen Miller from Northwestern University Medical School.

Dr. Brandon covered the things that Viacyte is working on in the field of beta cell encapsulation, and how their research is going. The good news is that encapsulation human trials are scheduled to start this year.

Dr. Miller spent some time going over important research into nanoscience and immunology. Specifically, the difference between immunosuppressants and tolerance therapy. The appeal is the hope that immune tolerance therapy could be used to treat autoimmune disease, so (possibly) Type 1 diabetes could be averted altogether.

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Finally, we got to hear Kelly Close of Close Concerns and Diatribe fame. Kelly’s an amazing advocate, and she’s been involved in artificial pancreas trials in both Boston and Virginia. In fact, she was a participant in the study I got booted from in January. It was great listening to her talk about what closed-loop testing is like, and mostly, what it feels like. That’s really what I wanted to hear, and I wasn’t disappointed. It was fascinating listening to her talk about the dichotomy of being connected to medical devices, but feeling normal throughout the night. No lows or highs to sap her energy or make her feel hung over the next morning. She also gave a great roundup on where diabetes technology stands today all over the world. Which is pretty exciting to say the least.

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If you’re thinking it was a full day, you’re right. And that was just what was on stage last Saturday. Wednesday, we’ll talk about my interactions with a couple of the summit attendees, and my meetup with one of my favorite writers.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)

People are talking: #JDRFSummit Part One.

March 3, 2014 – 10:13 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’m going to break it out into three days of posts. Today, I’ll cover the morning’s presentations. Tomorrow, the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

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The day began with a talk by Bethany Salmon, who is in charge of translational development for JDRF. What does that mean? I was wondering that when the talk started. What I found out was that it means the development and commercialization of therapies for people with diabetes. Those therapies include Artificial Pancreas, smart insulin, beta cell encapsulation, prevention, and restoration of functioning pancreatic beta cells. That last thing, Bethany reminded us, is JDRF’s definition of a cure. Any of the other therapies would be great developments, but they would also mean JDRF is still going to work for a cure.

Anyway, translational development basically means the JDRF team works to identify and accelerate projects. If they see something promising, they’ll provide matching funds for research. What happens then? They hold quarterly meetings with recipients of funding to make sure they’re on target. Recipients of JDRF research grants are held to specific performance milestones for their projects. It’s good to know JDRF is being responsible with the money they’ve raised over the years.

Ms. Salmon also shared a short JDRF video that spoke to me. To me, it’s the perfect video to show at gatherings like this, where some of the people in attendance may be feeling like the diabetes wheels are spinning in place, and they need a fresh pick-me-up. I’m happy to share it with you here:

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Next was a great presentation from Dr. Trang Ly, who was filling in for an ill Dr. Bruce Buckingham, talking about closed-loop testing, and studies to try to help lower instances of hypoglycemia at night. Dr. Buckingham and Dr. Ly work in pediatric endocrinology at Stanford University. I’ve written before about the work they’re doing out there, and Dr. Ly gave us an update.

She talked about research on a low-glucose suspend system like the Medtronic 530g with Enlite. They found that LGS can prevent severe hypoglycemia in most cases, in both children and adults. Makes you wonder why Med-T didn’t try harder to get pediatric approval from the FDA for their device(s).

They’ve done a series of tests (in Australia, if I remember correctly) on predictive low-glucose suspend, where the system predicts a hypo, then shuts off the pump. They started testing with adults, then tested with teens, and progressively younger kids. They start testing with 3 to 6 year olds soon.

She also gave a recap of diabetes camp testing out in California. And she mentioned two studies starting soon: One with kids at Camp Jordan in Virginia, and bionic pancreas testing using a bi-hormonal pump up in Boston. Most moving to me was early on in her presentation though. She had handwritten answers from kids who were asked the question “What do you fear most about nighttime hypoglycemia?”. The answers: “Waking up in a coma and dying”, and “Not waking up”. Those are typical responses… but when you see them in the handwriting of children, who should never have to bear that kind of burden, it really hits you where you live.

And while I’m at it, let me pass along a great big thank you to children and their parents who agree to take part in this crucial testing of closed-loop systems.

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Then it was Dr. Roland Tisch, who’s working out of the University of North Carolina, trying to see if there are options for reversing diabetes (other than, you know, cinnamon and okra). There was a lot covered in his short time on the podium, so you might want to check out his presentation when it gets posted online in a week or so. In short, according to Dr. Tisch, there are three keys to establishing remission in patients with diabetes: 1)Eliminating pathogenic T-cells in islets, 2)Increasing Treg cells to maintain long-term autoimmune protection, and 3)”Normal” immunity has to remain unaffected. In other words, fixing one part of our immune system doesn’t help if the therapy breaks another part of it.

Look for Dr. Tisch’s presentation later to learn more about pathogenic T-cells and Treg cells and why they’re important discoveries, and important parts of the research they’re doing.

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All of this happened before lunch on Saturday. No wonder my head was spinning! Tomorrow, I’ll try to cover the afternoon speakers, and on Wednesday, more about the human interaction portion of this terrific event.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)

Manning Diabetes Symposium, part two.

April 30, 2013 – 9:50 am

Just in case you’re wondering, I did not receive anything for attending this symposium, or for writing about it. I paid my fee to attend, I drove to Charlottesville, and I made (and paid for) my own accommodations.

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Going to the Manning Diabetes Symposium at the University of Virginia Medical Center was an amazing experience. To be honest, I was a bit worried about being in the same room with all of the brainiacs in attendance. I was surprised when I received my badge for the symposium and saw that it had my name and my blog address on it. Instantly, I thought Oh No, they’re going to know I’m a writer! Then I thought… Cool!

I was speaking to someone about a month ago, and they were talking about being in meetings with industry executives and other very important people in their field, and wondering sometimes whether they really belonged. I said this, and I really believe it: We all deserve to be in the room. We deserve to be part of the discussion. We shouldn’t take our participation for granted, but we definitely deserve to be there. If you get a chance to attend something like this, I encourage you to go and be part of it. After all, they’re talking about things that are very important to you. Don’t you want to know what’s going on?

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Friday’s lectures began with information from three heavyweights in the diabetes research arena: Guillermo Arreaza, MD from the National Institutes of Health (NIH) and the National Institue of Diabetes and Digestive and Kidney Diseases (NIDDK); Dr. Richard Insel, Chief Scientific Officer at JDRF; and Marc Anderson, Senior Program Officer for the Helmsley Type 1 Diabetes Program, part of the Helmsley Charitable Trust. They all covered what they’re about and what they’re working on right now. Dr. Insel, in particular, gave a very compelling presentation. I’m very appreciative of what these three groups do to research and study diabetes, therapies, and new technology.

What they didn’t talk about, and what I’m concerned about for the future, is this: I have a good job, with good benefits. So I have access to new therapies and new technology when it’s available. But there are many in the USA who do not. And there are many around the world for whom a diabetes diagnosis amounts to a death sentence. I’d like to know what these three organizations are doing to study or address that.

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Then there were two compelling talks focused on genomics and diabetic complications. Jesus Flores, MD and PhD from Massachusetts General Hospital and Harvard Medical School, covered the work that his group is doing on research and analysis of genome-wide association studies of Type 2 Diabetes. In addition, he leads research for the Diabetes Prevention Program, studying genetic variants on the development of diabetes. And those are just two of the things he’s involved in.

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Rama Natarajan, PhD from City of Hope in California gave a super presentation on Epigenetics in Type 1 Diabetes and its Complications. That description sounds pretty nerdy, and it might be hard to understand, but trust me: I was hanging on every word. Honestly, if I was looking for someone to speak at a diabetes conference, she would be near the top of my list.

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Then it was on to Immunointerventions and Cellular Therapy. Presenting was Dr. Kevin Herold, Professor of Immunobiology and Medicine at Yale University; Dr. Camillo Ricordi from Diabetes Research Institue; and Dr. Matthias von Herrath, VP and Director of Novo Nordisk’s Type 1 Diabetes Research and Development Center. They each gave tons of information related to studies designed to identify potential targets for cellular and immune system therapies for the treatment of Type 1 Diabetes. I’m skeptical when it comes to this kind of research, but I’m glad that they’re all involved in it. We need to explore every available possibility, and this is one of those possibilities.

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So now, let me back up to Thursday evening. There was something called a Poster Session. Maybe you’ve heard of this, but I had never seen it before. Basically, there was a separate room containing about a dozen bulletin boards. On each side of the bulletin boards were posters containing information on diabetes studies recently completed or currently underway (including the one I’m participating in! I felt special). Next to about half of the posters were people who were leading or directly involved somehow in the studies. It was great to read about important investigations being done and then speak to the experts who were getting their hands dirty in the research. It was absolutely the best part of the symposium for me.

Here’s a tidbit: A study was done looking for a link between certain personality traits and management of blood glucose. The results? People who tested as “conscientious” has more lows and were at higher risk for lows than others in the study. People that tested as “industrious” had higher BG variability. People noted as “independent and achievement oriented” had fewer normal range BGs, had a higher BG risk, and had higher BG variability. People who tested as just “independent” had significantly lower BG variability. And people with “openness and understanding” had fewer lows, but fewer normal range values. They were at a lower risk for lows, but higher risk for highs. Didn’t see all that coming, did you?

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So that’s it. Thanks to everyone who organized and presented this sypmosium. I’m very glad I could be there. If you have any questions about any of the presentations or the presenters, please let me know.
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (0)

Manning Diabetes Symposium.

April 29, 2013 – 9:47 am

MDS

I was back in Charlottesville last Thursday and Friday. Not because of my clinical trial or for medical screenings, or anything like that. This time I went to attend the Manning Diabetes Symposium. This is a meeting of very, very smart people who spent parts of two days talking about the great diabetes research taking place in various parts of the world.

Seriously, I was the only one there that didn’t have a ton of letters after their name. In the sessions, the speakers would cover their topic then take questions from the audience, many of whom were presenters at the conference too.

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Day one was devoted partly to islet beta cell stress and islet pathology and potential targets for therapy. Basically, they’ve nailed down the development of diabetes to beta cell stress, leading to insulitis (inflammation of the islets), which leads to pre-diabetes, then destruction of the beta cells resulting in diabetes. Can anything be done to stop this process, or possibly reverse it? They’re working on it. Interesting insights from Dr. Raghu Mirmira, Eli Lilly Professor of Pediatric Diabetes and Director of the Pediatric Diabetes Research Group at Indiana University, Indianapolis.

Also speaking was Dr. Alberto Pugliese, Head of the Immunogenetics Program at Diabetes Research Institute in Florida. He spent a lot of time talking about JDRF’s nPOD program, a program that provides, without cost, rare and difficult to obtain tissues beneficial to their work in (hopefully) curing Type 1 Diabetes. The nPOD acronym stands for Network for Pancreatic Organ Donors with Diabetes (don’t know what happened to the extra D, but what the hey). Anyway, it’s a very interesting looking program, and I invite you to check it out at
http://www.jdrfnpod.org.

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Also on Thursday was a lot of artificial pancreas talk. First off, from Dr. Bruce Buckingham, Professor of Pediatrics Endocrinology at Stanford University, information on camp and in-home studies designed to try and measure reductions in nocturnal hypoglycemia related to the AP. In short, they were successful and they plan to do more studies in the near future.

In addition to that, Ed Damiano, PhD from Boston University came and spoke about all of the great AP research and trials they’re doing up in Boston. This was mostly the same talk I heard back in February at the Children With Diabetes Focus on Technology conference in the D.C. area (you can read about it here). I really liked the fact that during the question-and-answer session afterward, he made a real point of saying that artificial pancreas technology is a great thing, but it’s far from the perfect solution. I liked the question-and-answer portion with him anyway. He’s very passionate about the work they’re doing up there, and he really is an intelligent person who seemed to be very forthcoming and a step ahead of the questioners the whole time.

Finally on Thursday, there was Dr. Eric Renard, who is doing AP work at Montpellier University in France. He brought us up to date on current developments in Artificial Pancreas technology and testing, including what’s happening in Europe, where their testing is a little further along than it is here in the USA.

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After the talks, there was something called a Poster Session, which I’ll talk a little more about tomorrow because it was very cool. I’ll also cover what was presented on Friday before the end of the conference. This was a very educational couple of days and I can’t wait to tell you about the second half.

Just in case you’re wondering, I did not receive anything for attending this symposium, or for writing about it. I paid my fee to attend, I drove to Charlottesville, and I made (and paid for) my own accommodations.
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (3)
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