Open Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research

forestglip

forestglip

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Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research
Unhide® Project Also Known as The Unhide® Solve Together Unified Platform

Brief Summary
The unhide® Project is a non-interventional, longitudinal research study designed to establish a secure data repository of demographic, health, and lifestyle information from individuals with brain inflammation and related neuroinflammatory conditions.Participants in the United States aged 2 years and older will provide self-reported health data, biometrics, and symptom diaries through the MyDataHelps™ app (branded as unhide® for this study).The goal is to create comprehensive longitudinal profiles to facilitate research into disease subtypes, causes, diagnostics, and potential treatments, as well as to identify potential participants for future optional studies."Healthy" individuals without brain inflammation are also eligible to participate.

The digital health research platform used in this study was originally developed and designed by Solve M.E and was called SolveTogether.The Brain Inflammation Collaborative (BIC) expanded upon Solve M.E.'s work to include related diagnoses, pediatric participants, enhance symptom tracking, and more.BIC and Solve M.E.combined Solve Together and unhide®, to create The unhide® Solve Together Unified Platform in 2025.

Eligibility Criteria
Participants may be either self-diagnosed, or diagnosed by a physician with the following conditions:
  • Infection-associated chronic conditions such as Long COVID, chronic Lyme, myalgic encephalomyelitis (ME/CFS), and post-acute neuropsychiatric syndrome (PANS/PANDAS).
  • Neuroimmune, developmental, autonomic, and neurological conditions like migraines, dysautonomia, POTS, multiple sclerosis, and autism spectrum disorder.
  • Autoimmune diseases such as Lupus, Sjogren's Disease, rheumatoid arthritis, myasthenia gravis, ankylosing spondylitis, and related autoimmune conditions.
  • Inflammatory gastrointestinal conditions such as Crohn's Disease, Celiac Disease, and ulcerative colitis.
  • Behavioral and mood disorders such as anxiety, depression, bipolar disorder, PTSD, eating disorders, OCD, and other related conditions.

  • "Healthy" people (without brain inflammation), including unaffected individuals, unaffected individuals in the same household, and unaffected individuals who are married to relatives and family members.

  • Have consistent internet access and a cell phone, tablet, or PC since this is an online or app-based platform that requires entering data and completing surveys.
  • Currently live in the United States
  • Be able to participate in English (stay tuned for updates about the Spanish language version)
  • Be willing to share symptom and health data through the platform
Enrollment (Estimated)
10000

ClinicalTrials.gov: NCT04806620
 
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I didn't see any discussion about this study on the forum, though there are a few mentions of it, for example:
Dolphin said:
(Only for people in the US I believe)
From Solve ME:

The unhide® + Solve Together Unified Platform is here! The Unified Platform is a digital health platform built by patients for patients.

By participating, you can:

- Track your symptoms
- Connect your smartwatch
- View your health patterns over time
- Download symptom reports to share with providers
- Virtually connect to research studies

Be part of the solution – Join the Unified platform today.

www.unhidenow.org

Brain Inflammation Collaborative
Click to expand...
ahimsa said:
There's more information here:
Solve M.E. and The Brain Inflammation Collaborative Launch the Unified Platform to Advance Research Across 30+ Chronic Conditions

They've also announced a webinar scheduled for October 14:
Click to expand...

It's studying a lot of conditions that they are referring to as "brain inflammation and related neuroinflammatory conditions", and participants can be self-diagnosed.
forestglip said:
  • Infection-associated chronic conditions such as Long COVID, chronic Lyme, myalgic encephalomyelitis (ME/CFS), and post-acute neuropsychiatric syndrome (PANS/PANDAS).
  • Neuroimmune, developmental, autonomic, and neurological conditions like migraines, dysautonomia, POTS, multiple sclerosis, and autism spectrum disorder.
  • Autoimmune diseases such as Lupus, Sjogren's Disease, rheumatoid arthritis, myasthenia gravis, ankylosing spondylitis, and related autoimmune conditions.
  • Inflammatory gastrointestinal conditions such as Crohn's Disease, Celiac Disease, and ulcerative colitis.
  • Behavioral and mood disorders such as anxiety, depression, bipolar disorder, PTSD, eating disorders, OCD, and other related conditions.
Click to expand...

Here's the website for the study: https://unhidenow.org/

Edit: It is a project of Solve ME and the Brain Inflammation Collaborative.
 
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I cannot see any indication as to what will be done with collected information. If this is registered as a trial I would expect it to fall under tight privacy regulations that generally require explciti descriptions of what the data is to be used for.

It looks worse than useless to me.
The only thing that I can think of as a motivation is that it will act as a promotional channel for money-making 'health professionals'.
 
Jonathan Edwards said:
I cannot see any indication as to what will be done with collected information. If this is registered as a trial I would expect it to fall under tight privacy regulations that generally require explciti descriptions of what the data is to be used for.
Click to expand...
The study enrolment page doesn’t contain any info to the patients whatsoever. You have to book a call with someone.

Study Enrollment | Unhide

Thank You For Your Interest In The Unhide™ Project! Please Schedule A Call With The Brain Inflammation Collaborative Research Team To Finish the Enrollment Process How To Book The Enrollment Call: Scroll down to book a meeting. You can choose a meeting time under any of the three calendars...
unhidenow.org
 
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