Open US: The CHROME (CHRonic Fatigue SyndrOME) study

Andy

Andy

Retired committee member
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"Study participants will complete a kit + questionnaire to establish their CFS activity. A small fraction of participants will be asked to complete a second kit + questionnaire 1-2 weeks following the first sample collection. Participants may give permission to review their medical records, serving as another data source, but will not be required to do so. Providing medical record access helps researchers make connections between each participant’s blood and urine samples and their medical history.

Researchers will use self-reported information and medical records to understand the collected samples better by making connections between each participant’s blood and urine chemistry and their medical history."

https://thechromestudy.com/how-this-study-works/


"You qualify for the CHROME Study if you:
  • Have been diagnosed with Chronic Fatigue Syndrome by a healthcare professional
  • Are able to use our DxCollect® Fingerstick and urine sample collection kit to send a sample
  • Have access to a computer, tablet, or smartphone to be able to take health surveys"
https://thechromestudy.com/do-you-qualify/
 
"DxTerity is sponsoring the CHROME study. DxTerity is a Los Angeles-based research company that uses state of the art technologies to analyze DNA and RNA. They also developed the DxCollect® Kit (used in CHROME) for easy at-home collection of fingerstick blood samples. DxTerity will be analyzing the samples and information collected during CHROME to better understand the signs and symptoms of CFS, improving diagnostics and treatment options."

Hm.
 
MEMarge said:
Do you know who is running this study @Andy?
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Ariel has quoted the information given, the rest of the FAQ, such as it is, can be seen here, https://thechromestudy.com/faq/

Unless I missed it, they aren't specifying any particular definition of ME, so my assumption is that they are relying on that clinicians diagnosis of CFS to give them the right patients. If that's right then as evidence goes this won't be totally useless, but pretty close.
 
After giving them my email address, this is what I received.

Welcome!

Thank you for your interest in CHROME. CHROME is a study sponsored by DxTerity Diagnostics, that aims to better understand Chronic Fatigue Syndrome (CFS) and help future patients. Almost 250,000 Americans have been diagnosed by CFS, but the cause of this disease is still unknown. Currently there are no tools available to confirm a CFS diagnosis, and our goal is to change that. We are looking to find unique markers that prove an individual has CFS, but to do that we need your help.

Currently, we are looking for individuals who have CFS to participate in our study. Participants will be asked to complete two short questionnaires and collect some biological samples. This study will be done remotely through our app so you can participate from the comfort of your own home. The study app used is a secure platform that has been used in apple iWatch studies and the FDA for improving remote studies.

In the next few days, you will receive another email with an invitation to the study to confirm your eligibility. Please be on the lookout for that.

If you have any questions, please visit us on our website at https://thechromestudy.com/



Thank you for your help in better understanding CFS!

The CHROME Team
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I've been left with the impression that the NIH and some of our own charities have a hard time finding people with ME/CFS to participate in their studies. I was blindsided by the overwhelming response they are receiving. I think the ease of this study is appealing to pwME.


Good evening,

Thank you for your interest in participating in the CHROME Study!

We have had an overwhelming response supporting our study, and are currently processing your study invitation. Please be on the lookout for a follow up email coming soon.

In the meantime, if you have any questions, please feel free to reply to this email or contact us at: support@thechromestudy.com

We greatly appreciate your continued interest in this study, and support of the CFS/ME community.

Thank you for your patience,
The CHROME Study
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I was sent a link to download an app to my phone. After creating an account, I ordered a test kit.

The kit contains an odd single-use lancet, (thankfully they sent two as one failed), and a tube for urine. There's a collection cup and suction bulb for getting the urine into its tube. There's a block that goes in the freezer for keeping the urine frozen during shipping.

I collected my urine this morning before breakfast. The urine needs to be in the freezer for 2 hours before being shipped. After eating and resting a bit, I collected my blood sample. They need to be shipped on the day of collection.

The urine is shipped using FedEx. The blood is shipped using USPS.

I hope this makes sense because I'm foggy.
 
Brief Summary:
To collect blood and urine samples from patients with Chronic Fatigue Syndrome (CFS), myalgic encephalomyelitis (ME), and SEID (Systemic Exertion Intolerance Syndrome) and controls for genomic, viral and metabolomic testing.

Detailed Description:
To analyze gene expression (genomic) and viral analysis data from patients diagnosed with ME/CFS, the study will collect blood samples (finger stick) and information from up to 500 subjects for analysis. In addition, urine will be collected for all subjects to evaluate the study subject's metabolomics.

All participants will complete a single Study Collection event consisting of at least one MCD (2nd sample is optional) and one urine collection from home: 10% of each group (ME/CFS and Control) will complete a second Study Collection event approximately 1 to 2 weeks after the initial Study Collection. The second collection is to compare data between two collections from the same participants to observe any time-related changes in the results.

https://clinicaltrials.gov/ct2/show/NCT04859257
 
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