Want a Cure? Join Team Biobank!

Join the T1D Exchange Biobank - Be a Part of the Team 

Everyone who lives with type 1 diabetes (and their brother) wants a cure. 

To become a reality cures will take more than wishing to becme a reality. They will take research. Research needs people with diabetes to participate and maybe give a little blood. (Yes cures - I want variety of them - y'a know 'cause YDMV)

Seriously a little blood to the right researchers can help, only how do we know who needs the bio sample?

Enter the T1D Exchange. 

They have been pilot testing a biobank. It connects researchers and bio samples. The Exchange says, "To date, through the generous efforts of those willing to participate in this research, there are over 1,600 people enrolled and more than 450 test kit collections have been completed."

Full disclosure, my family are part of that 1,600. Yay Team Biobank!

The Exchange is moving from pilot test to public enrollment. Yay Team Biobank! 

Who doesn't like being part of a great team? Ok so it is tough to be part of the Patriots ball deflation squad but anyone with T1D can join Team Biobank.

Learn more and get started on sign up here: T1DExchangeLivingBiobank.org

Yay Team Biobank!

AADE Research on Meter Accuracy and Choice

From AADE

Research Highlights the Need to Ensure Accuracy And Patient Choice of Diabetes Testing Supplies

Inaccurate Blood Glucose Meters Cause Safety Concerns; Government’s Competitive Bidding Program Limits Access

For Release: January 21, 2014

Two new surveys conducted by the American Association of Diabetes Educators demonstrate once again the need for the healthcare, insurance, and diabetes educator communities to ensure that people with diabetes are using meters that are appropriate for their individual needs – and are accurate.

One survey – conducted online in November by Harris Interactive for the American Association of Diabetes Educators – found that 27 percent of patients with type 1 diabetes had experienced health problems due to inaccurate blood glucose meter readings. Roughly nine percent of those with type 2 diabetes had experienced health problems as a result of inaccurate readings.

While accuracy was ranked by a majority (60%) as one of the top three most important factors in determining which meter to use, more than two-thirds (68%) were not aware that many meters available today do not meet global standards for accuracy.

 

(more)

Joslin: Challenges and Opportunities in Type 1 Diabetes Research

The Joslin Diabetes Center hosted their first Type 1 Diabetes (T1D) Symposium on May 6 at the Harvard School of Medicine. Titled “Challenges and Opportunities in Type 1 Diabetes Research” there was an impressive group of speakers on a range of Type 1 research. 

The presentations were fascinating. Seeing the eager interchange between speakers was particularly encouraging. I left with a renewed confidence in the quality of work being accomplished and hope for success in taming T1D. Maybe my most significant take away was to recognize the passion that the researches have is akin to what we as parents of Type 1 kids feel. Those passions can come together when those of us living with T1D help support this work directly and through our elected government’s programs.

There were presentations on the autoimmune attack. Obviously understanding the autoimmune process is critical in being creative about how to stop that attack.    I found it amusing that the process was referred to as an “insult” to the beta cells. Makes me want to tell the beta cells to man up and take a little flack. Apparently it isn’t that easy. 

We were shown detailed images of how the macrophages attack beta cells.  One point that stuck with me was that the autoimmune attack may come in waves over a long period. This suggest that a treatment that mitigates the autoimmune process would need to also be in the body for a long period, be effective when there was a periodic attack on the pancreas and the rest of the time not harmful to other immune processes between those rounds of beta cell insults. 

Other presenters spoke on growing new beta cells. It seems that people must do so. Almost all of Joslin’s 50 year medalist, those folks with 50+ years of type 1, who donated their pancreas posthumously for research had functioning beta cells. So beta cells either last a lifetime or, more likely, they can regenerate. As one presentation discussed beta cells pretty much suck at reproducing. Ok that isn’t *exactly* how it was said but you get the idea. There is a small host of inhibitors of cell reproduction hanging out in beta cells. The good news is researcher knows they are there and maybe how to inhibit the inhibition. The closing presentation was on betatrophin which may help beta cells suck less at reproducing. 

Ed Damiano gave a presentation on progress towards a dual hormone artificial pancreas. He made a convincing case for the need for both insulin and glucagon as part of the system. He brought both the passion of a researcher and a dad to the table. It is not that he wants his son wearing a bionic pancreas, it is not the final solution. A cure is. Ed was humble, his research may give kids, like his, a better life while the search continues for a cure. 

That humility was clear throughout the symposium. This was not a day of headlines we so often see blazing about cures but humble presentations that were as much about what researchers didn’t know, as what had been discovered. Accompanying that was a clear desire, often expressed from the podium in reply to questions, to work with other and bring separate efforts together to perhaps jointly find what had not yet been found separately. 

It was a privilege to be there and being somewhat overwhelmed by the individuals giving presentations and asking questions. I can think of little that would have improved the day.    Well, other than a cure. 

My thanks to the Joslin Diabetes Center for extending me an invitation to attend as a member of the diabetes online community. Thanks also to Joslin’s co-sponsor, the Leona M. and Harry B. Helmsley Charitable Trust.

TrialNet: Now Online Sign Up, Local Blood Screening

TrialNet is an important way people can participate with clinical trials to study Type 1 Diabetes (T1D). Previously participants needed to go to a participating facility. The recently the National Institutes of Heath (NIH) announced expanded ways to participate. You can sign up online and have blood drawn at a Quest lab close to the participant, at no cost.

TrialNet needs at least 20,000 relatives of T1D people each year to support research. So we all can play a part in finding better treatments and cures. The first step is to roll up our collective sleeves and participate. Now that is even easier.

If you are connected to T1D, this is a way to step up and be part of doing something about it.

https://www.diabetestrialnet.org/webapp/OnlineScreening/OnlineConsent.aspx

Adapted from their website:

How Does Screening Work?

• Step 1:
 First TrialNet will ask some eligibility questions.

• Steps 2-3:
 TrialNet will verify they have your permission to screen your blood sample and collect personal information.

• Step 4:
 The Online Screening will ask for some basic family history information and a mailing address.

• Step 5:
 TrialNet will mail you a screening kit. Take your screening kit to your local Quest for your blood test. 

• 
  

• Note: Screening at Quest facilities is only available for persons located in the US, If you are located outside of this area, but still want to participate, please click here for more information

See answers to common questions about screening >

Who is eligible?

Anyone between the ages of 1 and 45 years with a sibling, child or parent with type 1 diabetes. 

Anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with type 1 diabetes.

New Hormone Linked to Insulin Production (yeah mice are involved)

Harvard Stem Cell Institute researchers have identified a hormone that is thought to stimulate beta cell production. Yes the research is in mice so lot of cautions are in order.  (I have been know to say in frustration that I think you can spit on a NOD Mouse in a lab and cure it.)

The researchers talk primarily about T2D but say there is possible hope increasing beta cell production in early T1D too.

Here is a link and a video from the Harvard Gazette article on the research:
http://news.harvard.edu/gazette/story/2013/04/potential-diabetes-breakthrough/ 

Wanted: Patients Voice in Diabetes and Emotional well Being

A few days ago I wrote about research were patients were not seen as a stakeholder in research. There were some good comments and I encourage you to go read them. If researcher are part of the problem so at times maybe are patients. I think at times we don't participate as much as we should (arguably because we don't see the results as being to our benefit or even accessible.) We need to step up when we can. Here is place we can. 

Glu has a survey for adult T1D about emotions of diabetes and T1D support. Any #DSMA regular knows this is an issue near and dear to the hearts of the DOC. Here is a chance to help patient views be part of the conversation. 

Here is how to share your voice:

1. Join Glu www.myglu.org (if you haven’t already.)
2. Scroll down to the bottom on the home page, in the glu u section click October’s Survey.
3. Look over the terms and agree as appropriate, this is being run by real researchers so yes there is a real consent process. (I think that approachable research is a good thing). Enter you password so they know it's officially OK with you. 
4. There are a number of questions each has its own page. A few of pages is a little cumbersome yes but it is a good start and an important topic. 
5. Participate, spread the word and help make it better.

Full disclosure. I was part of a group that offered views on how to start this process and communicate it to the DOC. I would love to see it succeed not because I had a tiny part in getting the ball rolling but because I think patients voices need to be a bigger part of the research process. Here is a chance to do that. Lets all help make the effort a success so they keep doing it.

Why not parents? As I said this is being done by real researchers with review boards and all that that involves. Doing research with kids, even parents sharing information about their kids is anther level of dotting I(s) and crossing T(s). It should be.  Kids deserve to  be protected with a little extra diligence. In the mean time parents of T1D kids share this with friends in the adult T1D community OK? 

Thanks.  

Vizzini's View of Diabetes Data Standards

One of the earliest YDMV posts stated out my view on diabetes data:

Type 1 isn’t all about the numbers. It is about kids living their lives. That said there are one hell of a lot of numbers. We gotta deal with the numbers, so we can love the kids as kids. Nobody need love the numbers. 

There are a ton of little electronic machines that produce billions and billions of numbers (and about as many strips on the floor). At times it seems we are floundering in a sea of data points (and strips on the floor). Unfortunately each machine speaks its own language. What we need is the UN. United Numbers.

It seems that I am not the part of the diabetes universe that sees data standards as a problem.  I recently read two articles that make the case for researchers to have a common diabetes data set. Data Standards in Diabetes Patient Registries (Journal of Diabetes Science and Technology May 2011) and A Strategy of Defining Common Data Elements to Support Clinical Care and Secondary Use in Clinical Research, (AMIA Clinical Research Informatics Summit 2010) both make the case that research would be better off with standards to facilitate data that researches, “collect once, use many times.”

As I understand the issue, research reinvents the diabetes data wheel with virtually every study. Each study collects what they are interested in but since it is not a common data set few studies have data that can be combined and used to further additional investigation.

One paper even has this lovely little graphic that helps demonstrate the overlap of parties that could benefit from common data. 

The second paper goes on to talk about these stakeholders in detail:

“There were no defined data standards for primary or secondary use in T1D at the start of this project, and so it is likely that the elements we have compiled will be subject to debate and revision when vetted in a broader T1D stakeholder community, which should include perspectives from diabetes care, research, population monitoring, and quality measurement.”

Notice anybody missing from that? 

I did. 

People with Diabetes.


It is their data.

In short if researchers want people to share their health information, there should be a value for participating. The ethical term is beneficence, that the research does some good for the participants.

I think that for diabetes research to find solutions that improve the lives of people living with diabetes those researchers need to ask the right questions. Starting with: Who is a stakeholder? As the risk of sounding like Vizzini, it seems inconceivable to effectively improve patient outcomes without seeing people with diabetes as a stakeholder in the process. 

http://www.youtube.com/watch?v=D58LpHBnvsI

Thanks Riva for the Shout Out in @JDRF Research Summit Column

Riva Greenberg has a write up of the JDRF Research Summit in her Huffington Post column. She nicely details the topics covered that day. She also quotes my YDMV write up saying;

What I, and more than 600 attendees with Type 1 diabetes, family members, health care providers and industry representatives, learned in a nutshell is what blogger Bennet Dunlap put so well, "I don't see a magic bullet coming but I do see different approaches to tackling things that will count as a cure. Those will happen like everything does in increments. Along that journey we'll see better care before cures. So prevention may come before restoration of beta cell function, that's cool, steps matter."

Thanks for your kind comment Riva, I am flattered.

If you missed the event please read Riva's piece to get a glimpse of what you missed. Two of the day's presentations are available on theBetesNOW.

Meet the T1D Exchange
Top 10 Things We Don’t Know About Type 1 Diabetes

#TwoBits - Research Videos on Faustman and T1D Exchange

Meet the T1D Exchange from the DC JDRF Research Summit on theBetesNOW
http://thebetesnow.com/?p=201

Manny has a fascinating video interview with Dr Faustman on TuDiabetes.
http://www.tudiabetes.org/video/an-interview-with-dr-faustman-2012

JDRF Research Summit on theBetesNOW

Over on theBetesNOW.com there is one of the presentations from last weekend's Research Summit put on by the Capital Chapter. Mark Atkinson talks about the top ten things we don't know about Type1 Diabetes. Worth the 25 minutes.

Love to know your thoughts.


http://www.ydmv.net/2012/02/huge-props-to-jdrfcapitol.html

Huge Props to @JDRFCapitol

Next to CWD’s Friends for like the JDRF Capital Chapter Research Summit has to be the best type 1 event of the year. Great presentation by folk dedicated to making life with diabetes better on the way to cures. The order matters. Improving care is critical and will come as a result of searching for cures.

Cures. I don’t see a magic bullet coming but I do see different approaches to tackling things that will count as a cure. Those will happen like everything does in increments. Along that journey we’ll see better care before cures. Like everything with diabetes you better care and your cure may vary. So prevention may come before restoration of beta cell function, that’s cool, steps matter.

I get energy from this summit. The strength to keep hoping.  Maybe even believing there will be a cure someday. In the mean time life progresses is being made to better. Better understanding. Better ways of care. Better Lives. That progress requires individual involvement, starting with believing, then learning and participating from knowledge.

That is how all life works, believe, learn, act.
Why should diabetes be any different than life?

More later. First things first. Thanks and appreciation to the JDRF Capital Chapter. Until then here are some links that may be interesting:

JDRF and IDDP
Last Year's Capital Chapter Research Summit

FTNW: Medtronic Research

When Medtronic held their social media summit in April one of the topic of conversation was the wealth of data that the CareLink system creates. An obvious question is how is that data studied and is it open to folks outside the big M.?

Today Medtronic with ADA announced such studies. These are anonymous, hippa compliant uses. You can read more at the ADAlink:
http://www.diabetes.org/for-media/2011/Medtronic-Research-Grant-Release-2011.html

DC Type 1 Diabetes Research Summit

The Capital Chapter of the JDRF brought together a collection of professionals who shared the research they are doing.  In most cases they also shared a personal connection that drive them to try to improve the lives of people living with type 1 diabetes.

In addition to the speakers there were a number of tables where advocates, pharma and researches could present there work in a trade show like environment. The organizers had a full kids program to allow families to participate without kids becoming overwhelmed by the scholar’s presentations.

For those with the experience, it was like a day at Friends For Life where you do all the research track presentation while the kids hung out (with supervision.) There was even a similar buffet lunch experience - the kids ate chicken fingers.

There were maybe three to four hundred people there. Pretty impressive for a cold Saturday in January.

I was happy to join with a number of other bloggers and made my first feeble attempt at tweeting in real time. Here the thing, I don’t quite know how to condense complex ideas into 140 character synopsis and both convey meaning and still pay attention. I don’t think I did either well - fortunately that wasn’t the point of the day.

I was very happy to see a JDRF local chapter take on such a significant roll in supporting the families who walk for JDRF. I was some what gladly drove three hours to attend and was impressed by the researches both in their work an in their passion driven by personal connections to type 1.  I think that connection gets lost. I find it compelling to know the guy running the study at BU on the bionic pancreas is motivated to make his child life better.

It was also enlightening if not encouraging to hear about the process of working with the FDA. The FDA is cautious. They are slow. They are careful. That caution can be seen as slowing down the process of getting advances in care to the market. However I think it is important to know about how the FDA approaches risk. It is good to know the JDRF is in regular contact working with the FDA to keep the risks of simply living with diabetes on the table.

I think it is appropriate and useful for the JDRF to work in conjunction with industry to help promising advancements get through that review process. Particularly those products that focus more on the smaller part of the diabetes market, those living with type 1.  In that context events such as this help clarify why JDRF should be working with the for profit side of the industry. Advances need to come to market.

I think that understanding the process of research, commercialization and approval is important. I think good communication helps both develop support for innovation over the long term and inspiration to do better with what we have in the short term.

I was very pleasantly surprised by the scope and quality of the Capital Chapter’s Research Summit. I am thankful for their hard work. I am appreciative of the sponsors support. I think the Capital Chapter of JDRF offers a model for other chapters looking to engage with those living with type 1.