Reference Document

WeCureUs Researcher Data Use Agreement

Document version: 1.0-DRAFT
Effective date: [TO BE SET AT LAUNCH]
Status: Draft for legal review

Introduction

This Researcher Data Use Agreement ("Agreement") governs your access to WeCureUs aggregate community data through the WeCureUs query interface. By registering as a researcher and receiving an API key, you agree to be bound by the terms of this Agreement.

WeCureUs is a participant-driven health information platform. The data accessible through this interface was contributed voluntarily by people living with multiple sclerosis and other chronic neurological conditions. The protections described in this Agreement are not merely contractual obligations: they reflect the trust those participants placed in WeCureUs when they shared their experience. Violations of this Agreement are violations of that trust.

1. Who May Register

Any individual may register as a researcher. WeCureUs does not require institutional affiliation, academic credentials, or identity verification as a condition of registration. You are responsible for the accuracy of the information you provide at registration, including your name, institution or affiliation (if any), and stated purpose.

WeCureUs reserves the right to revoke access at any time if your use of the data is inconsistent with this Agreement or with the platform's public benefit purposes.

2. The Data You Can Access

2.1 Aggregate-Only Output

No individual participant record is accessible through any query. The WeCureUs query interface is architecturally designed to return population statistics only. This is not a matter of policy access control that could be bypassed through clever querying. The system that researchers access is structurally prevented at the database connection layer from reaching any individual participant record or any personally identifying information.

Every result you receive represents the collective experience of a group of participants, not the data of any single person.

2.2 K-Anonymity Protection

Every query result is subject to a minimum cohort threshold. At the time this Agreement takes effect, no result is returned for a cohort of fewer than five participants. Any query result that would require surfacing data attributable to fewer than five individuals is suppressed. A suppression indicator is included in the response so you know when data has been withheld.

For certain data dimensions, where a cohort falls below the threshold at exact precision, the system may return a result at a coarser level of granularity rather than suppressing entirely. For example, individual birth years may be replaced with five-year or ten-year bands, and numeric values may be expressed as ranges. Where generalization has been applied, the response includes a field indicating the precision level used. You should not treat generalized results as if they were exact-precision data.

WeCureUs reserves the right to adjust the minimum cohort threshold by Board resolution. Any change to the threshold will be communicated to registered researchers and reflected in an updated version of this Agreement.

2.3 What Is Currently Queryable

At the time this Agreement takes effect, the following are available through the query interface:

Queryable response types: Single-select questions, yes/no boolean questions, year-format questions, numeric integer questions, and multi-select questions (questions where a participant may choose more than one option).

How multi-select counts work: For a multi-select question, each option's reported count is the number of distinct participants who selected that option. A participant who selected several options is counted once in each of those options' counts, but is counted only once in the cohort size. Because of this, the option counts can add up to more than the cohort size, and that is expected. The same protections apply as for every other question type: an option whose distinct-participant count falls below the minimum cohort threshold is withheld, and the entire result is withheld if the number of distinct participants who answered the question is below the threshold.

Cohort filter dimensions: Queries may be filtered by the following participant characteristics: MS subtype, diagnosis year, birth year, biological sex, gender identity, postal code prefix, and disease-modifying therapy status.

Aggregate demographic distributions: Distributions over birth year, diagnosis year, age at diagnosis, and years since diagnosis.

Not currently queryable: Free-text question responses are not aggregated or exposed through the query interface under any circumstances.

WeCureUs will communicate additions to the queryable surface through researcher notifications and updates to this Agreement.

2.4 What Is Never Accessible

The following are not accessible through the query interface under any circumstances, now or in the future, regardless of query design:

Individual participant records of any kind
Participant names, email addresses, phone numbers, or any directly identifying information
The link between a participant's identity and their health data
Free-text responses in any individually identifiable form
Raw document contributions (radiology reports, lab results, ancestry records)
Any data element that could reasonably identify a specific individual

3. Registration and API Key

3.1 Registration

Registration requires your name, institutional or organizational affiliation if applicable, and a description of your intended use of the data. Registration is processed automatically. You do not receive human review of your stated purpose as a condition of access, but your stated purpose is logged and associated with your query history.

3.2 Your API Key

Upon registration you will receive an API key. This key is shown to you exactly once and is not recoverable. Store it securely. WeCureUs stores only a cryptographic hash of your key, not the key itself.

Your API key is personal to you. Do not share it with colleagues, students, or collaborators. If you need to provide access to additional people, each person should register independently and receive their own key.

3.3 Key Revocation

WeCureUs may revoke your API key at any time if your use is inconsistent with this Agreement. Revocation is immediate. You may also request revocation of your own key at any time by contacting hello@wecureus.com. Revocation does not delete your registration record or query history.

4. Query Logging

Every query you submit is logged. The log record includes:

A pseudonymous session token derived from your API key (not the key itself)
Your researcher identifier
The module, question, cohort filter, and aggregation parameters you submitted
The cohort size and suppression status of the result
The timestamp of the query

Query logs are retained indefinitely as an audit record. WeCureUs uses these logs to monitor for patterns consistent with the prohibited uses described in Section 6, including attempts to reconstruct individual-level data through repeated or overlapping queries.

5. Permitted Uses

You may use WeCureUs aggregate data for the following purposes:

Academic and non-commercial research into multiple sclerosis, neurological conditions, and related health topics
Publication of findings in peer-reviewed journals, preprint servers, and academic conferences, subject to the attribution requirements in Section 7
Exploratory analysis to determine whether a signal is present before designing a formal study
Teaching and educational purposes, provided individual-level re-identification is not attempted
Internal research at pharmaceutical, biotech, or healthcare companies, subject to the restrictions in Section 6

6. Prohibited Uses

The following uses of WeCureUs data are expressly prohibited:

6.1 Re-Identification

You may not attempt to identify any individual participant or to combine WeCureUs aggregate results with any other dataset in a way that could identify a participant. This prohibition applies regardless of the sophistication of the technique used and regardless of whether the attempt succeeds.

Submitting multiple overlapping queries designed to isolate the characteristics of a small group of participants is a form of re-identification attempt and is prohibited. WeCureUs monitors query patterns for this behavior.

6.2 Resale and Commercial Data Products

You may not resell, sublicense, or incorporate WeCureUs aggregate results into a commercial data product. This prohibition applies to the query results themselves, to derived datasets created from those results, and to any product whose value derives substantially from WeCureUs data. Using aggregate results to inform original research, analysis, or conclusions that you then commercialize is permitted; embedding or packaging the data itself is not.

6.3 Access Conveys No Special Status

Your registration gives you access to the same aggregate query interface available to every other registered researcher and to any user. It does not give you privileged access to data, access to individual-level records, or query capabilities that are not available to others.

WeCureUs does not sell, license, or monetize individual-level participant data, and does not accept any grant, sponsorship, payment, or other arrangement that conditions financial support on the ability to influence platform content, module design, research priorities, or how results are framed. Your registration does not create any such arrangement, and you may not offer or enter into one.

Nothing in this section prevents you from suggesting a question, a module topic, or a research direction through the ordinary channels open to anyone. Suggestions are evaluated on their merits, and registration confers no right to direct, prioritize, or veto what the platform asks or how it is designed.

6.4 Prohibited Research Purposes

You may not use WeCureUs data to:

Identify or target participants for recruitment into any study, program, or commercial offering
Underwrite or price health insurance or any insurance product
Make employment-related decisions about any individual
Train or evaluate any AI or machine learning model whose primary purpose is to profile, score, or make decisions about individuals
Support litigation against any participant, patient group, or patient advocacy organization
Support any research whose conclusions are predetermined by a commercial funder and that WeCureUs data is being used to validate rather than to test

6.5 Misrepresentation

You may not misrepresent the nature, scope, precision, or provenance of WeCureUs data in any publication, report, or communication. This includes presenting generalized or suppressed results as if they were exact, presenting aggregate results as representative of the broader MS population without appropriate caveats, and omitting material limitations of the data in published work.

7. Attribution and Publication Requirements

7.1 Attribution

All published work that uses WeCureUs aggregate data must include the following attribution:

Data sourced from the WeCureUs patient-driven health information platform (wecureus.com). Aggregate results are subject to k-anonymity protections with a minimum cohort threshold of [threshold at time of query]. Results represent self-reported participant data and have not been independently verified against clinical records.

You may adapt this language for journal style requirements but must preserve the substantive content including the k-anonymity disclosure and the self-reported data characterization.

7.2 Notification

You agree to notify WeCureUs at hello@wecureus.com when a publication using WeCureUs data is accepted for publication or publicly released. This notification is for our records and to help us track the research impact of the platform. It is not a condition of publication and WeCureUs does not have editorial approval rights over any publication.

7.3 Data Limitations

Published work must include a limitations section that addresses, at minimum:

The self-reported nature of the data and the absence of clinical verification
The minimum cohort threshold and its implications for small-subgroup analyses
The current scope of the platform (MS-focused, English-language, online-accessible participant population) and how that scope may affect generalizability
Any cohort or question filters applied that may affect representativeness

8. Researcher Obligations

8.1 Compliance

You are responsible for ensuring that your use of WeCureUs data complies with all applicable laws and regulations in your jurisdiction, including data protection laws, research ethics requirements, and institutional review board or ethics committee requirements where applicable. WeCureUs makes no representations about whether aggregate query access requires IRB approval in any particular jurisdiction. That determination is your responsibility.

8.2 Security

You are responsible for the security of your API key and for any queries submitted using it. If you believe your key has been compromised, contact hello@wecureus.com immediately to request revocation.

8.3 Accuracy of Registration

You represent that the information you provided at registration is accurate and that your stated purpose is an honest description of your intended use. If your purpose or affiliation changes materially, you agree to update your registration information.

9. WeCureUs Obligations

WeCureUs agrees to:

Maintain the technical and organizational safeguards described in the WeCureUs privacy documentation
Enforce the minimum cohort threshold on all queries, without exception
Log all queries and maintain those logs as an audit record
Notify registered researchers of material changes to the queryable data surface, the minimum cohort threshold, or the terms of this Agreement
Not share your registration information or query history with any third party except as required by law or in response to a valid legal process

10. Disclaimer and Limitation of Liability

WeCureUs data is self-reported by participants and has not been independently verified against clinical records, medical records, or any external data source. WeCureUs makes no representations about the clinical accuracy, completeness, or representativeness of the data.

WeCureUs provides the query interface and data as-is. WeCureUs is not liable for the accuracy of query results, for decisions made on the basis of query results, or for any harm resulting from your use of the data.

You assume sole responsibility for the research, analyses, publications, and other work you produce using WeCureUs data.

11. Term and Termination

This Agreement remains in effect as long as you hold an active WeCureUs researcher registration. Either party may terminate by revoking access or canceling registration. WeCureUs may terminate access immediately and without notice if it determines that your use violates this Agreement.

Termination does not affect the obligations in Sections 6, 7, and 8, which survive termination with respect to data already accessed.

12. Changes to This Agreement

WeCureUs may update this Agreement from time to time. Material changes will be communicated to registered researchers by email if an email address is associated with your registration, and will be posted at wecureus.com/research/terms. Continued use of the query interface after the effective date of an updated Agreement constitutes acceptance of the updated terms.

13. Governing Law

This Agreement is governed by the laws of the State of Oregon, without regard to conflict of law principles.

14. Contact

Questions about this Agreement, the data, or your registration may be directed to hello@wecureus.com.

Acceptance

By completing researcher registration and using the WeCureUs query interface, you confirm that you have read and understood this Agreement and agree to be bound by its terms.

WeCureUs, Inc. | 1401 Oak Ridge Drive, Hood River, Oregon 97031 | wecureus.com
Researcher Data Use Agreement version 1.0-DRAFT | For legal review prior to adoption