Loop Observational Study by Jaeb Center for Health Research

Diabetes Technology DIY Closed Loop Systems
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If you are using (or planning to use) the do-it-yourself Loop automated insulin delivery system you may be eligible to join an observational study conducted by the Jaeb Center for Health Research and sponsored by the Helmsley Charitable Trust. More details can be found on the study home page.

The study is being done in collaboration with Loop developers and Tidepool to collect information from adults and children with type 1 diabetes using Loop. The purpose of the study is to collect information from 300 - 1,000 adults and children with T1D using Loop in the United States. This information will be used to learn more about how well Loop works, what problems users have, how often severe hypoglycemia and diabetic ketoacidosis occur, and how well the system controls blood sugar levels.

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Thanks for posting this, @Dragan1. I just signed up yesterday and have completed my first queue of surveys. This should help provide some scientific evidence about the quality of Loop treatment. I encourage all Loop users here to contribute to this effort.

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Hey Terry4, how much time/work would be involved in trying to start up on loop? I don’t think I could participate because I’ve had such bad luck with Medtronic pumps. I’m super interested, but there may not be options available if I am uncomfortable with the hardware. Is this a correct understanding/assessment?

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The amount of work and time it takes varies from person to person. A lot will depend on your willingness and motivation to integrate this technology into your life.

The documentation contains what you need to know to get started. Here are the instructions for three most typical do-it-yourself automated insulin dosing systems.

AndroidAPS - http://wiki.androidaps.org/

Loop - https://loopkit.github.io/loopdocs/

OpenAPS - http://openaps.readthedocs.io/en/latest/index.html

I think the essential personal resources needed are the ability to follow written instruction and the persistence to continue your effort when faced with adversity. Most people considering this option overweight the technical ability thought to be needed to succeed.

Once someone has read the source documents and secured the necessary hardware, a great deal of help is available on the Facebook Looped group page. There exists a strong core group pay-it-forward ethic in this community.

Help is available if you ask for it, but asking questions plainly addressed in the documentation is not good form. The community is willing to hold hands with new members but likes to see some personal initiative also.

If you don’t want to use an older Medtronic pump, there are options in the AndroidAPS systems. In fact one of the more appealing ones for me is using an in-warranty Dana pump manufactured by the South Korean company, SOOIL. It is not generally available in the US, yet, but is available in parts of Europe and the UK. When this pump debuts in the US, it will open up more opportunity for people.

There are also some Accu-Chek pumps that are loopable. Check out the AndroidAPS document for info on that option.

If I didn’t want to fool around with the DIY options, I would be strongly consider the Tandem X2 with Basal-IQ and the G6 CGM. Basal-IQ provides low protection and later this year, Control-IQ will provide automatic pump delivery adjustments to counteract highs.

Good luck with your choice. I think patients need to take control of their treatments and not wait for the doctors and med-tech companies to supply what they want. I find the patient #WeAreNotWaiting movement inspiring.

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Anybody have any predictions/intuition about OpenOmni? Seems to be stuck, but I dont know if its a $-thing, or a legal-thing, or a technical hold up. I think there’s new tech on the horizon that might be slowing things down until a new model is released?

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Here’s a November 2018 diaTribe piece about this.

Insulet aims to launch its Horizon hybrid closed loop system in the second half of 2020, allowing users to control the Omnipod direct from their own smartphone and remain in closed loop even when the phone is out of range. A user would only need to wear the Dexcom G6 CGM and pod, and the Horizon algorithm embedded in the pod would automatically increase/decrease insulin delivery to improve a user’s time-in-range (70-180 mg/dl) and reduce hypoglycemia. The Insulet Horizon smartphone app would allow users to check the system status and take meal boluses, as needed.

Tidepool Loop could be available sooner than Horizon (i.e., before late 2020), depending on how things go with the FDA. Tidepool has also said that it hopes to have many more pump partners for Loop, meaning the automated insulin delivery app could eventually work with a variety of pumps. There are a number of questions to answer, such as responsibility for customer service, etc.

I have no insider info about the Tidepool Loop/Omnipod project but knowing the people involved, I would not be surprised if they produced an automated system before the introduction of Insulet’s Horizon system projected to debut in the second half of 2020. I can’t help but think that this planned Horizon introduction serves as a potent source of motivation for the Tidepool Loop team.

Separately, there is still a do-it-yourself effort in place to produce a system, the so-called OpenOmni. I don’t have any updates on that effort, but that project could surprise us, too.

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Thanks, Terry4. Exactly what I was looking for.

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Hey, have we ever seen anything published or did covid mess everything up?

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Yes, I saw numbers released a few months ago probably in the Loop FB site, but I believe the results were presented at a conference at the time. Unfortunately, I don’t recall the exact results as to me they seemed underwhelming compared to how well Loop has helped me improve control.

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Posting numbers on FB does not seem an adequate response to the great communal effort that took place. I don’t know if I feel good about how all this went down.

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Sorry, I meant that, that is where I saw the notification about the conference where the results were presented. If you are a FB member you could search the Loop group.

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Here it is. Its not much, but its something, I guess.

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