Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E.

Andy

Andy

Retired committee member
Preview of the project.
The Solve ME/CFS Initiative (SMCI) is in the final stages of constructing a new state-of-the-art patient registry platform.

Last year, we took the initiative to create a new and better patient registry in order to facilitate research and address a key barrier to defining the natural history of myalgic encephalomyelitis, commonly referred to as chronic fatigue syndrome (ME/CFS). SMCI will use this new technology to enhance our ability to collaborate and exchange data with various organizations and groups. The new patient registry contributes to the overarching goal of harnessing robust, patient-driven data. The development of this tool is vital to furthering the scientific understanding of ME/CFS and producing tangible benefits for the ME/CFS community. Virtually all other diseases have a centralized registry; SMCI is pleased to fill this void for ME/CFS.

This registry is also important in light of the NIH ME/CFS collaborative Data Management Coordinating Center (DMCC) expected to launch in early 2018. SMCI’s registry will work in conjunction with the NIH Collaborative Research Centers (CRCs) to form a comprehensive and integrated approach to data collection, management, and its use in research.
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http://solvecfs.org/wp-content/uploads/2018/01/Chronicle_National_Patient_Registry.pdf

ETA: Title, and minor formatting corrections.
 
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SMCI: National ME/CFS Patient Registry Meet the Community Guide – Brian Vastag

The Solve ME/CFS Initiative (SMCI) National ME/CFS Patient Registry, developed in partnership with the Genetic Alliance and Platform for Engaging Everyone Responsibly (PEER), is readying for launch in the first half of 2018. As part of the roll-out, we will be publishing a series of articles in Research 1st to inform the community about the features and benefits of the new platform. This article is the second in a series on the Registry Community Guides. You can read the first article, which featured Community Guide Jennie Spotila, here.

Community Guides provide guidance on how to individualize the privacy settings available in PEER. The Guides are helping SMCI shape and validate its approach to soliciting patient information.
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https://solvecfs.org/national-cfs-patient-registry-meet-community-guide-brian-vastag/
 
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Well, I've read what Jennie Spotila and Brian Vastag say about the SMCI patient registry but I'm not really any the wiser. Is there a description anywhere of what kind of data they will be collecting, whether it ties in with biomedical research, and who can take part?

I've just noticed it's called a national patient registry - which presumably means it's just for the USA.
 
Webinar: Solve ME/CFS Initiative, "You + M.E.: A community resource, built by the community", 6th December 2018

In 2010, Solve ME/CFS Initiative (SMCI) launched the SolveCFS Biobank to connect researchers with control samples and data from both patients and controls. The Biobank pioneered an approach to strengthen the ME/CFS research ecosystem and supported a range of studies that contributed to the cumulative understanding of the disease. It’s now time to go further. SMCI is implementing a redesign of our current process and building a new patient registry in partnership with a range of community stakeholders that will be linked with our existing biobank: You + M.E.

Join SMCI’s Chief Scientific Officer, Sadie Whittaker, PhD, for a discussion on building a resource that is reflective of the priorities of individuals with ME/CFS and responsive to their needs, empowering them to partner with a network of researchers and providers to find solutions.
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Register at https://register.gotowebinar.com/register/5744870584301904899

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After a quick scan of their website (https://solvecfs.org/eligibility/) I wasn't clear about whether the You + M.E. registry was a US or an International initiative so sent them an email enquiry. Here's their reply: International.
We are designing the You + M.E. to be a global registry and will be accepting international participants. We are working through the various privacy laws with counsel so we can make sure it accords with standards outside the United States. I encourage you to pre-register at the link! We look forward to reporting out with more information in the new year
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Pre-register here if interested: https://solvecfs.org/you-m-e-registry/
You + M.E is a patient registry and biobank for the ME/CFS community. Participants will enter symptom data in web-based surveys and via a mobile health tracking app. Patients own their data and can opt-in to share it with researchers. Help us bring the big data revolution to ME/CFS research.
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Will be interesting to see more detail next year.
 
From an email sent today by Solve

Thank you for being one of the first to pre-register for the You + M.E Registry and Biobank. It’s been awhile since we’ve checked in, so we wanted to give you a progress update.

As you know, the goal of You + M.E is to collect health information and biological samples from people living with ME/CFS and healthy volunteers, and to make the anonymized data and samples available for research. The growth of this Registry will create an information hub that will help us better characterize ME/CFS and define disease subtypes.

There are two key components to achieve this goal:

  1. Collaboration and partnerships with other registries and research groups that will allow us to build the biggest dataset possible
  2. Tools that will incorporate rich sources of data, including a way to record health information on an ongoing basis
You might be wondering why the Registry is taking longer than we anticipated to launch. The answer is that we’ve been working hard behind the scenes to establish partnerships: you may have seen our recent announcement here.

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We’ve also developed a mobile app for easy capture of data over time. We recently ran the app through beta testing with a group that included people living with ME/CFS and their loved ones, and experts from clinical care, research, and technology. Feedback from this test group is currently being incorporated. Below are some screengrabs of the beta version app.

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Thank you for your patience and continued partnership as we build a big data revolution for ME/CFS!
​
A reminder that this Q&A with Sadie Whittaker from Solve discussed the registry and app, https://www.s4me.info/threads/video...r-from-solve-me-cfs-initiative-may-2019.9425/
 
Andy said:
A video preview of the registry.
Code: 
https://youtu.be/Anz5fwcWLOw


And a You+ME Impact Tool, https://youandmeregistry.com/m-e-impact-tool/, that they say is "designed to create a visual way to communicate the impact of ME/CFS."
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I will certainly be taking part. Looking forward to it. At first I wasn't sure because it was supposed to have been already funded as part of a NIH grant and seemed to duplicate efforts:
As part of a major, multi-institutional, multidisciplinary assault against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a highly debilitating and poorly understood chronic disease, Jackson Laboratory (JAX) Professor Derya Unutmaz, M.D., has received a five-year grant totaling $10,553,732 from the National Institutes of Health. This Center will be one of three ME/CFS Collaborative Research Centers (CRCs) that will be awarded, together with a Data Management and Coordinating Center (DMCC).
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The San Francisco-based company Precise.ly is involved in clinical tracking of the broader patient community.
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But precise.ly don't appear to have made any progress. There was an announcement that the service would have started early this year but it almost appears to have closed down. It appeared to be quite big, a side venture from the 23andme founder. But now what?

https://www.jax.org/news-and-insights/2017/september/new-chronic-fatigue-center-grant

So basically SMCI is doing the work that NIH already funded? Or is it different? Additive? Which is probably a good idea since they can't seem to commit to anything but that already appeared to have significant funding. Will this patient registry be part of the common data elements? What happens to that precise.ly funding then?

Still not much transparency about what is happening out of NIH funding. Same old same old.
 
Merged thread

You + M.E. (International ME/CFS Registry) Website Live!


You_ME_logo.png


Registries are foundational in understanding, treating, and curing diseases. This approach is desperately needed in ME/CFS. That’s why we’re proud to have created one for ME/CFS that will be accessible to all.

With the generous help of our partners and the community, we have built a data platform and symptom tracking mobile app that will help connect patients, healthy controls, clinicians, and scientific researchers across the world to help solve the mystery of this debilitating disease.

In the coming weeks, the You + M.E. platform and accompanying mobile app will be launched to a testing group and shortly after will be available to all participants. In the meantime, check out the You + M.E. website to learn more about the Registry and let us know what you think at registry@solvecfs.org

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Support this effort to bring a global data repository for ME/CFS. Please make a gift today.

Thank you,

sadie_signature_min.png

Sadie Whittaker, PhD
Chief Scientific Officer
Solve M.E.


P.S. Make sure to check out the You + M.E. Impact Tool, designed to create a visual way to communicate the impact of ME/CFS.
 
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Looking good!

One question: If you had pre-registered, does that mean you have automatically joined the registry, or do you need to re-sign up on the website now?

I tried the Impact Tool and almost stopped right at the first question because it asks about fatigue, the second question, too. That allergy to the f-word...

The next questions are about PEM - much better - only the answers here will depend a lot on how well you're pacing and could give a falsely positive picture. There's also a ceiling effect with respect to recovery time, the longest possible option being 5+ days. A relevant question would be how much (or rather how little) you can do without triggering PEM though I admit I don't have any idea how that could be incorporated into the app.

There's another ceiling effect with respect to how many things you miss out on in a month, 20+ being the highest option. 20 would mean having days in a month when you don't miss out on anything - if only!

I realise there's a plus sign in 5+ and 20+ but those figures are just so much lower than my reality, they don't feel at all representative.

However, I do like the app's focus on missing out on things. That's something most people should be able to relate to.
 
I do not own a mobile phone . I can get confused enough on the land line . I once spent 3 days phoning the wrong cab no . until my mum came over to see what number I was using .
 
Ravn said:
Looking good!

One question: If you had pre-registered, does that mean you have automatically joined the registry, or do you need to re-sign up on the website now?

I tried the Impact Tool and almost stopped right at the first question because it asks about fatigue, the second question, too. That allergy to the f-word...

The next questions are about PEM - much better - only the answers here will depend a lot on how well you're pacing and could give a falsely positive picture. There's also a ceiling effect with respect to recovery time, the longest possible option being 5+ days. A relevant question would be how much (or rather how little) you can do without triggering PEM though I admit I don't have any idea how that could be incorporated into the app.

There's another ceiling effect with respect to how many things you miss out on in a month, 20+ being the highest option. 20 would mean having days in a month when you don't miss out on anything - if only!

I realise there's a plus sign in 5+ and 20+ but those figures are just so much lower than my reality, they don't feel at all representative.

However, I do like the app's focus on missing out on things. That's something most people should be able to relate to.
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Thanks so much for sharing that feedback! I'll pass it along to the research team and report back.

There's also an "add detail" function that I think is not yet available on the beta version? Did you see that on your version? My understanding is that for every day you report using the basic app function, there's an "add detail" area to elaborate on symptoms and triggers if you have the energy. We heavily emphasized "low movement" as a key priority during the app's development. "Low movement" meaning the lowest possible amount of scrolling/swiping/tapping so that using the app is not physically demanding to use.

I think that 5+/20+ may be part of the "low movement" compromise so that there is less scrolling overall.
 
Oh! Almost forgot -

Here's a follow-up announcement from the research team:


You might have heard by now that we’re readying the You + M.E. Registry for launch. Right now, a small group of users are gearing up to test the Registry platform and mobile app.




So, what is a Registry anyway and why does it matter for ME/CFS?

A Registry is an organized system that allows us to collect large amounts of uniform data from individuals with a specific disease. The resulting large dataset will better enable researchers to identify causes and treatments by:

  • Yielding a deeper understanding of the disease
  • Helping identify subtypes
  • Facilitating the engagement of pharmaceutical companies
  • Speeding up clinical trials and parsing through the most effective treatments
  • Helping people with ME/CFS track symptoms day-to-day, making it easier to share that information with healthcare providers and loved ones and communicate the impact of ME/CFS
  • Supporting connectivity and collaboration, making researchers, patients, and healthy controls partners in progress in the fight against ME/CFS
You can learn more about You + M.E. here: http://go.solvecfs.org/e/192652/201...h=QB8fJZ8KDUHoEBSFNG7YIXqFRVVS5nTbS6m0GUNnCT4

Thank you for your support as we build a big data revolution for ME/CFS!




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Sadie Whittaker, PhD
Chief Scientific Officer

Allison Ramiller, MPH
Director of Research Programs
 
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