Reference Document

WeCureUs Participant Informed Consent

Document version: 1.1

Effective date: July 5, 2026

Before You Begin

This document describes what WeCureUs collects, how it is stored and protected, how it is used, and what rights you have over your own data. Please read it carefully before creating an account.

Participating in WeCureUs is entirely voluntary. You may stop at any time, delete your account and all associated data at any time, and adjust your level of participation at any time without conditions.

By completing enrollment and accessing the WeCureUs participant portal, you accept the terms of this consent. A copy of this document will remain accessible at all times at wecureus.com/consent.

Who We Are

WeCureUs, Inc. is an Oregon benefit company founded by people living with multiple sclerosis and their partners, built around a single conviction: the lived experience of people with chronic neurological conditions is the most valuable and least collected data in disease research. The platform collects that experience directly, protects it with the strongest available technical safeguards, and makes it available to the research community in aggregate form only.

WeCureUs is not a healthcare provider, health plan, or insurance company. We are not legally classified as a covered entity under the Health Insurance Portability and Accountability Act. However, we have voluntarily adopted HIPAA-equivalent technical, administrative, and physical safeguards because the people who share health information with us deserve the same level of protection that federal law requires in clinical settings. This commitment is written into our Articles of Incorporation as a binding public benefit purpose.

All technology partners who handle participant health data have signed Business Associate Agreements with WeCureUs, including Google Cloud Platform, Amazon Web Services, and Paubox. Processors that handle only non-health information, such as our text message delivery provider, are listed with their covering agreements in the Third-Party Data Processing section below.

What We Collect and Why

Account and Identity Information

To create an account we collect your email address, which is used to send you a sign-in link. No password is ever created or stored. During enrollment we also collect your first and last name.

We also collect and verify a mobile phone number. A verified phone number is required to protect your account. WeCureUs uses two-factor authentication: during enrollment, and when you sign in from a new device, we send a one-time verification code by text message that you enter to confirm the number. These verification codes are a required security step for the account you are creating, they contain no health information, and they are separate from the optional text message reminders described in the SMS Notifications section below.

This identity information is stored in a database that is completely separate from your health data. The two are linked only by an anonymous internal identifier that is never exposed to researchers or to any external party.

Module Questionnaire Responses

WeCureUs collects health experience data through structured modules covering topics such as your MS diagnosis history, cognitive symptoms, fatigue, pain and sensory changes, mobility, mental health, treatment experience, and your diagnosis journey. The set of available modules grows over time, and you choose which modules to complete and at what pace.

Your responses are stored in a database keyed only by your anonymous identifier, never by your name or email address. This database is completely separate from the database that holds your identity information, and the system that researchers use to query the community data is structurally prevented from accessing the identity database at all.

Specific data points collected through modules include:

MS diagnosis subtype, diagnosis date, and date of first symptoms
Date of birth, which you may enter in full or as a year only. If you enter a full date of birth, the complete date is stored in the response database. Only your birth year is used in aggregate statistics presented to researchers.
Postal or ZIP code, stored in full. Aggregate statistics presented to researchers use a geographic prefix rather than your exact code.
Biological sex and gender identity, as separate questions, each optional
Treatment history and current disease-modifying therapy status
Free-text responses to open-ended questions, stored verbatim
Your responses to any other questions across all modules you complete

All free-text responses, including open-ended answers and follow-up text, are stored and retained. An automated keyword detection system runs on all free-text input at the time of submission to identify language that may indicate a participant is in distress. This system logs detection events including the type of match, confidence level, and a cryptographic hash of the message, but never stores the triggering text separately from your response record. See the Crisis Detection section below for more detail.

If you re-answer a question your previous answer is retained alongside the new answer. The most recent answer is used in community statistics, but your full answer history is preserved.

Document Contributions (Optional)

You may optionally contribute text records from your clinical history, including radiology reports from MRI examinations, laboratory results, and ancestry or genealogical data from consumer genetic services. Each of these contribution types is optional and completely separate from your module participation.

When you contribute a document, you paste its text directly into the platform. That pasted text is sent to an AI service for processing and is not stored anywhere by WeCureUs after processing is complete. The AI extracts structured information from the text, such as lesion locations from a radiology report or test values from a lab result, and returns only that structured extraction to WeCureUs for storage. The original text is discarded.

The structured data extracted from your documents is stored in the same anonymous, pseudonymous database as your module responses. It is keyed only by your anonymous identifier.

Ancestry and genealogical data may include information derived from genetic testing services. WeCureUs collects ancestry composition percentages and haplogroup labels as reported by those services, not raw genomic sequences or DNA data.

An AI-generated plain-language interpretation of your contributed document is available on request as a separate optional step. This interpretation is generated from the already-extracted structured data, not from the original pasted text.

By submitting a document, you acknowledge that its text will be processed by an AI service and that only the structured extraction will be retained. A brief acknowledgment appears at the point of each submission.

SMS Notifications

WeCureUs offers optional text message (SMS) reminders to help you keep up with your participation. These reminders are separate from the one-time verification codes used to secure your account, and they are entirely optional.

Opting in. During enrollment, and at any time afterward in your profile settings, you can turn on text messages for the notification types you choose. Turning on a text message option is your express consent to receive recurring automated text messages from WeCureUs at your verified number. If you do not turn on any text message option, WeCureUs does not send you reminder or notification text messages.

Message types. Messages you may receive include participation reminders (prompts to return and continue a module), longitudinal check-in reminders, and occasional announcements that a new module or feature is available. These messages contain no health information. They are notification prompts only, directing you to sign in at wecureus.com.

Message frequency. Message frequency varies and depends on the reminder cadence you choose in your account settings.

Cost. Message and data rates may apply, according to the terms of your mobile carrier plan.

Opting out. You may opt out at any time by replying STOP to any WeCureUs text message, which stops all WeCureUs reminder texts, or by turning off text message reminders, or changing your reminder method to email, in your account notification settings. You may reply HELP for assistance. Opting out of SMS reminders does not affect your ability to use the platform, and does not stop the one-time security verification codes, which are a required part of signing in.

SMS delivery is handled by Twilio, our messaging provider. See the Third-Party Data Processing section below for details.

How We Use Your Data

Community Aggregate Statistics

The primary use of your data is to produce community aggregate statistics accessible to participants and researchers. These statistics describe the collective experience of the WeCureUs community, not any individual. Every result is protected by a minimum cohort threshold: no query ever returns a result for a group smaller than five participants. Any data point that would require identifying a group of fewer than five people is suppressed or reported at a coarser level.

Researchers access these statistics through a query interface that enforces this threshold at the database layer. No researcher ever receives individual-level data under any circumstances. The participant portal includes community query tools that let you explore this same aggregate data yourself; they show only aggregate statistics, protected by the same minimum group of five described above, and never reveal any individual's answers.

The Learn Panel

The WeCureUs portal includes a conversational AI assistant in the Learn panel. When you interact with the Learn panel, your message is processed first by a crisis detection system, then, where appropriate, by an AI model. The AI may retrieve your own module responses to answer questions about your data. It may also query community aggregate statistics on your behalf, subject to the same minimum cohort protections that apply to all researcher queries.

The AI model used by the Learn panel runs on Amazon Web Services Bedrock under the AWS Business Associate Agreement. AWS does not retain your data for training or any other purpose.

What We Never Do

WeCureUs does not and will never:

Sell individual-level participant data to any party under any circumstances
License, monetize, or otherwise make individual data available commercially
Allow any advertiser, sponsor, grantor, or commercial partner to influence what questions are asked, how results are presented, or how data is used
Return individual records through any query or interface
Allow pharmaceutical companies, insurance companies, or any commercial entity to access anything beyond the same aggregate query interface available to all registered researchers

AI and Automated Processing

AI Processing of Document Contributions

When you contribute a radiology report, lab result, or ancestry record, an AI model classifies the document type and extracts structured information. This processing is performed by Amazon Web Services Bedrock under the AWS BAA. The original text is never stored by WeCureUs.

AI-generated summaries of your contributed documents are generated from structured extraction data only, never from the original text. These summaries carry explicit caveats. For radiology reports, the summary notes that stable imaging findings do not indicate stable function, addressing the clinical phenomenon of progression independent of relapse activity. For lab results, the summary notes that normal values do not mean your symptoms are not real. For ancestry data, the summary frames findings as research context only, without asserting causal relationships.

Crisis Detection

An automated keyword and pattern detection system runs on all free-text input you submit. This system identifies language that may indicate distress and responds with appropriate resources. Detection events are logged with a classification level, confidence score, detector version, and a cryptographic hash of the message content. The text that triggered the detection is not stored separately; it remains only as part of your response record.

This system operates entirely on WeCureUs infrastructure and does not involve any external AI service for the detection step itself.

Third-Party Data Processing

Partner	What they handle	Covering agreement
Google Cloud Platform (Firebase, Cloud SQL, Cloud Run)	Authentication, database storage, application infrastructure	GCP Business Associate Agreement
Amazon Web Services (Bedrock)	AI document processing, Learn panel AI	AWS Business Associate Agreement
Paubox	HIPAA-aligned transactional email delivery	Paubox Business Associate Agreement
Twilio	Text message delivery and opt-out (STOP) processing for participants who have opted in to SMS reminders, and delivery of one-time account verification codes	Twilio Messaging Services Agreement. No Business Associate Agreement is required because these text messages contain no protected health information, only notification prompts and verification codes.

No participant data is shared with any third party not listed above without explicit separate consent. No third party listed above uses participant data for their own training, analytics, or commercial purposes.

Data Separation and Security

Your identity information (email address, name, phone number) and your health data (module responses, document contributions) are stored in completely separate databases. They are linked only by an anonymous internal identifier.

The system that researchers use to query community data is architecturally prevented from accessing the identity database. This is enforced at the database connection layer, not only at the application layer, meaning that even a software error in the researcher query system could not expose identity information.

All data is encrypted at rest and in transit. Access to databases is restricted to specific platform services with documented minimum-necessary permissions. All database access is logged and auditable. These controls are consistent with the technical safeguard requirements of the HIPAA Security Rule.

Your Rights

Delete your account. You may request deletion of your entire account at any time, with immediate effect and no conditions. Deletion removes all of the following: your identity record, the link between your identity and your health data, all module responses, all document contributions, all consent records, and your authentication credentials. The only record that survives is a cryptographic hash of your user identifier stored in an audit log to prove the deletion occurred. This hash cannot be used to recover any of your data.

Re-answer questions. You may return to any completed module and re-answer any question at any time. Your previous answer is retained in the history but the new answer is used in community statistics.

Review your data. You can review your module responses through the dashboards in the portal and your document contribution history in the Your Records section.

Correct your data. Corrections are made by re-answering the relevant question through the module.

Export your data. You can export a full copy of your data at any time from within the portal.

Revoke document contribution consent. If you contributed a document and wish to have the structured extraction removed from your record, you may request removal by deleting your account, which removes all your data, or by contacting us at hello@wecureus.com to request removal of a specific record.

Opt out of public features. Any feature that involves public disclosure of your data carries a separate, explicit opt-in consent. You may revoke that consent and remove your public content at any time.

Some questions in WeCureUs modules are designated as longitudinal. These questions are presented again at intervals of three months, six months, or twelve months depending on the question type, to track how your experience changes over time. You will be notified before a longitudinal question is re-presented, and you may skip it at any time.

You can set your preferred reminder method, by email or text message, and your reminder cadence from within your account settings.

This consent is version 1.1. The version number and effective date appear at the top of this document and are stored with your acceptance record.

If WeCureUs makes material changes to how participant data is collected, used, or shared, you will be notified and asked to review and accept the updated consent before continuing to use the platform. Changes that are purely additive (new features, new module types, new optional contribution types) that do not change the fundamental data practices described here will be disclosed in an updated consent but may not require re-acceptance at each change.

Contact

If you have questions about this consent, your data, or your rights, please contact us at hello@wecureus.com.

Acceptance

By completing enrollment and accessing the WeCureUs participant portal, you confirm that you have read and understood this consent, that you are 18 years of age or older, and that you agree to participate on these terms.

WeCureUs, Inc. | wecureus.com