Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research
What it found
No result yet.
What it measured
Main measures
Phenotypic data collection
From Baseline through up to 10 years, with assessments approximately every 4-12 weeks
FatigueMood and sleepSubtyping
From Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Walking and mobilityQuality of life (reported by participants)Passive data collection
From Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Other measures (4)
Demographics
From Baseline through up to 10 years, with assessments approximately every 52 weeks
Comorbitities
From Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Quality of Life and Functional Status
From Baseline through up to 10 years, with assessments approximately every 4-12 weeks
PainQuality of life (reported by participants)Symptoms
From Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Thinking and memoryFatigueMood and sleepQuality of life (reported by participants)
Who could take part
MS (type not specified) · 2 and over
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
As registered. Criteria can change, so ask the trial team or your neurologist.
Contact details on the registryAbout this trial
In the sponsor's words
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.
Papers
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History
Started
Jul 2023
Main results due
Jun 2030
Finished
Dec 2030
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