The AminoChain research registry
FOR PARTICIPANTS
FOR RESEARCH PARTNERS
No one else has your health journey. That is exactly why it matters. The way your condition flares, responds, and settles is yours alone. The AminoChain registry is a longitudinal biobank: it links your samples, health records, and check-ins over time, so researchers can study how disease and treatment actually unfold rather than a single snapshot. The Participant Portal is how you take part, keep track of your own health, and see what the research finds.
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Who can join
By joining with your condition, you show us where research is needed and help bring new studies to your community. If you have no known health condition, your contribution provides an important point of comparison, helping researchers better understand health and disease.
Myasthenia Gravis
Neuromuscular · Enrolling
Atopic dermatitis
Skin · Enrolling
Hidradenitis Suppurutiva
Skin · Enrolling
“Healthy” controls
Comparison · Enrolling
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Walkthrough
What you get
Most of your condition happens outside the clinic. The app is where you keep track of it, so your care team and researchers see the whole picture.
Health journal
A quick check-in on how you feel, what you took, and what you did. Over weeks it becomes a picture of your condition you can bring to your next appointment.
Health profile
Your diagnosis, treatments, and connected medical records in one place, so you never have to retell your history from the beginning.
Rewards
Points for everything you do in the app, from registering, to answering a survey, to donating a sample. Redeem them for gift cards whenever you like.
See your impact
Your sample never disappears into a freezer. You get a notification when it arrives, and updates as the study moves forward.
01 Sample received
Your sample arrives at our lab and is logged to your record. You get a notification the same day.
02 Quality control
We check the sample is sound before it goes any further.
03 Ready for research
Your sample is linked to your record and made available to approved studies.
04 Updates in the app
Study updates as they happen, and the points you earned along the way.
Points and rewards
You earn points for what you do in the app: joining, completing surveys, connecting records, donating a sample. Redeem them for gift cards whenever you like. Some study activities, such as a skin biopsy, are compensated at higher rates and explained before you agree.
100 points = $10
Join the registry
Create your account, consent, and connect your health records.
500 points · $50
Donate a sample
Blood, saliva, or another minimal-risk sample collected at home.
500 points · $50
Complete a survey
Questionnaires about your condition and how you feel.
50–500 points · $5–$50
Daily check-in
How you feel today, in a couple of taps.
Points per check-in
Gift cards from brands you use
Redeem in the app whenever you like.
Every point accounted for
Your balance and history, with each contribution listed.
Prefer to give back?
Points can also be donated to research in your condition, toward sequencing or a study.
What comes back to you
Taking part should not be a one-way street. As studies progress, what we learn comes back to the people who made it possible.
Health reports
A personal summary of your check-ins and surveys over time, ready to share with your care team.
Data from your samples
The data types generated from what you donated, and insights from your sequencing data where the study returns them.
Where you sit in the cohort
Aggregated statistics on people with your condition, and how your own picture compares.
Publications
The papers and findings your contributions were part of, in plain language.
And more. What comes back grows with the registry. Each study spells out what you will receive before you consent.
How it works
01 Take a short screening survey
A few minutes about you and your condition, so we know which studies might fit. It is not a medical intake and nothing is shared without your say.
About 3 minutes
02 Join in the app
Download the Participant Portal, read the study in plain language, and consent when you are ready. Take your time; the study will still be there.
iOS and Android
03 Stay connected
Check in, complete activities, and earn points. When a new study fits you, you hear about it first and decide each time.
Ongoing
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Common questions
Who can join?
Adults in the United States living with an autoimmune, inflammatory, or rare condition, and adults with no known condition ("healthy") who want to take part. Eligibility for each study depends on its criteria.
Does it cost anything?
No. Participation is free, and you earn points you can redeem for gift cards for what you contribute.
Will I need to donate a sample?
Only if a study asks and you agree. Most samples are collected at home. Many activities are surveys and check-ins in the app.
How does consent work?
Every study starts with clear information and your informed consent. You can review your choices in the app and ask the research team at any time.
What happens to my data?
It is de-identified for research and managed under privacy and security safeguards.
Can I stop participating?
Yes. Contact the research team and they will walk you through your options.
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Commonly Asked Questions
What is Myasthenia Gravis (MG)?
Myasthenia Gravis is a rare autoimmune disorder that disrupts nerve-to-muscle communication, causing muscle weakness and fatigue in the eyes, face, throat, and limbs. MG occurs when immune system antibodies target receptors needed for muscle contractions, such as the acetylcholine receptor (AChR).
How is Myasthenia Gravis treated?
Is this a clinical trial?
Who runs this study?
What happens to my sample?
How is compensation provided?
