Last Updated:  September 22, 2026

PURPOSE OF THIS AUTHORIZATION

This form authorizes Joined Bio, Inc. (“Joined Bio”, “We”, “Us”, or “Our”), to access and use Your (“Your” or “You”) health information in accordance with this document.

 

CHANGES TO TERMS                                                                                               

Joined Bio reserves the right to modify this document at any time.  We will notify You of any changes by updating the “Last Updated” date and You will have the option to re-authorize use of Your health information if necessary.

 

WHAT YOU ARE AUTHORIZING

By signing this document, You give permission to Joined Bio to:

1. Collect Your health information from:  i) electronic medical record systems You choose to connect to the Joined Bio platform, ii) self-reported information You directly enter into the Joined Bio platform or share via other means, and/or iii) documents You upload, email, or otherwise share with Joined Bio;
2. De-identify Your health information by removing personal identifiers (such as Your name or email address) while maintaining a secure re-identification key that allows Joined Bio to re-identify You when required. Note that documents are generally stored “as is” and may not be de-identified when stored.
3. Process and store Your health information in secure systems;
4. Contact You about participation in specific research studies that match Your health profile;
5. Share de-identified information with qualified researchers and research partners in accordance with this document;
6. Share Your identifiable information with regulatory bodies or other authorized entities (such as the FDA) only if You have participated in a study and it is required for research oversight and compliance; and/or
7. Use Your information in accordance with this authorization.

 

WHAT DATA WILL BE COLLECTED?

We will collect information about Your health, such as:

• Demographics (gender, date of birth, etc.);
• Medical history (conditions You may have or have had);
• Disease-specific data (diagnosis date, ratings, etc.);
• Vital signs (heart rate, blood pressure, etc.);
• Laboratory tests and results;
• Procedures (imaging, surgeries, etc.);
• Medications;
• Provider’s notes;
• Allergies;
• Vaccinations;
• Family history;
• Social history (smoking, alcohol use, exercise, etc.);
• Mental health or psychiatric treatment;
• Substance use or treatment;
• Sexual health, sexually transmitted infections, or HIV/AIDS status;
• Genetic information;
• Reproductive health information;
• Documents (such as lab reports, records, or images), whether provided directly by You or received through a connected electronic medical record system;
• Other information as available in Your medical record; and/or
• Other information provided by You directly.

 

HOW YOUR INFORMATION WILL BE PROTECTED

• Your structured health data will be de-identified before it is stored in Our platform.  This includes information received from electronic medical record systems You connect to the Joined Bio platform and self-reported information.
  • Personal information and other unique identifiers (name, address, email, contact information, medical record numbers, full zip code, IP address, etc.) will be removed before health data is stored.
  • A random participant ID will be assigned to Your de-identified health information.
• Documents (such as lab reports, records, or images) are generally stored as provided and may not be de-identified while in storage. This applies whether they are uploaded, emailed, or otherwise shared by You, or received through a connected electronic medical record system. Regardless, any information from a document that is released to researchers will be de-identified before it is released, whether shared as the document itself or as data drawn from it.
• Your health information will be stored in secure systems with HIPAA-grade security.
• Researchers only have access to de-identified health information and dates of service.  They will never have access to Your personal information or documents with identifiable information on them.
• All researchers who use Your data are bound by Data Use Agreements that specify additional data privacy and security protections.  Researchers are also prohibited from attempting to re-identify You.
• Your personal information, along with a copy of Your participant ID, is maintained separately from Your health information in secure systems. This link between Your personal information and Your participant ID is accessible only to You and authorized Joined Bio personnel and is used to re-identify You for study participation.

 

WHAT YOUR HEALTH INFORMATION WILL BE USED FOR

Joined Bio may use Your health information to:

• Perform feasibility assessments to determine whether Joined Bio’s participant community matches potential research projects;
• Match You with relevant research studies;
• Contact You when You match research, or in response to feedback, comments, or questions;
• Manage Your participation in research studies;
• Process and deliver rewards when You participate in research;
• Develop and improve health research;
• Contribute to scientific knowledge that may benefit patients with similar conditions;
• Enable life science research projects that may benefit from access to health data;
• Operate, manage, maintain, and improve Our services and platform;
• Detect or prevent fraud; and/or
• Otherwise accomplish Our business objectives.

Joined Bio will never distribute or license Your health information without Your direct consent as a participant in a research study, unless required to do so by law, regulation, or other compliance reason.

 

COMPENSATION MODEL

If You choose to participate in a research study, You will be eligible for compensation as clearly communicated to You prior to Your decision to join the study. Joined Bio also receives compensation from Our research clients when You participate in studies.

 

RETENTION OF YOUR HEALTH INFORMATION

Joined Bio will retain Your health information as follows:

• Health information will be retained until You request its deletion.  This may be accomplished by following the instructions below.
• If You participated in research studies, some health information may be retained indefinitely for legal, regulatory, contractual, or other compliance purposes.

 

YOUR CONTROL OF YOUR HEALTH DATA COLLECTION, USE, AND RETENTION

You have control of Your health information and may control its use at any time.

Revocation of Health Data Collection:

• To revoke Your authorization for Joined Bio to collect any new health data, contact Us at privacy@joined.bio.  Please include Your name, Your email address used on Your Joined Bio account, and Your Joined Bio patient ID on Your correspondence.
• When You revoke authorization, We will immediately stop collecting new health information from Your electronically-connected healthcare providers.
• Your existing data will remain in Our systems, allowing Us to continue matching You with relevant research studies.
• Revocation prevents future data collection but does not delete data already collected.

 

Revocation of the Use of Health Data for Study Matching:

• Within Your Joined Bio account, You may set preferences for the types of studies that You want to be considered for and contacted about.  As a default, You will be considered for all types of studies.
• To view or change Your study preferences, please sign in to Your Joined Bio account, and navigate to Your My Profile tab and select “Study preferences”.  You may update these preferences at any time.

 

Deletion of Health Data:

• To delete Your health data from Your account, please sign in to Your Joined Bio account and navigate to the My Health Data tab where You can delete uploaded data files, electronically-connected health data, and self-reported health data.
• When You request deletion of one of these types of health data, We will delete that type of health data from Your account.  If, however, You have participated in a study, We may be required to retain de-identified data used in that research for legal, regulatory, contractual, or other compliance reasons, even after You request deletion.  That retained data, though, is immediately unlinked from Your account and no longer available for future research use. Once You have deleted all categories of health data, no health data will remain associated with Your account.
• Once Your health data is deleted, it cannot be undone.  To add health data to Your account, You must go through the data connection or uploading process once again.

 

Deletion of Your Account:

• To delete Your account as well as Your health data, please sign in to Your Joined Bio account, navigate to Your My Profile tab, and select “Delete account.”
• When You request deletion of Your account, Your account will cease to operate.
• We will delete all personal data and health data associated with Your account, except data required to support security, fraud prevention, financial record-keeping, legal, compliance, or other regulatory requirements.  Additionally, if You have participated in any study, We must retain de-identified data used in those research studies.
• Once You have deleted Your account, it cannot be undone.  Should You want to participate in research again, You will have to create a new account and go through the data connection process once again.  This new account will not retain any properties of Your old account.

 

YOUR RIGHTS

You have the following rights regarding this authorization:

• Your authorization is voluntary.  You are not required to sign this form.
• You may revoke Your authorization, update Your study preferences, or delete data from Your account at any time by notifying Joined Bio.  Note that any de-identified information that has already been shared as part of research studies in which You have participated cannot be retrieved or deleted.
• Participation in specific studies is always Your choice.  If matched with a study, You will be contacted and may decide whether to participate.  Any study participation will require a separate informed consent process.
• You may be eligible for compensation when participating in specific studies that offer it.  Any compensation details will be clearly communicated to You prior to Your decision to participate in a study.
• You have the right to receive a copy of this signed authorization.

 

IMPORTANT NOTICES

• This authorization does not expire unless revoked by You.
• While Joined Bio is not a HIPAA-covered entity in its role as a data platform, We commit to maintaining HIPAA-grade privacy and security standards in Our handling of Your information.
• Joined Bio and researchers who work with Joined Bio take reasonable measures to protect Your de-identified information, but there remains a very small theoretical risk of re-identification.
• Joined Bio will never disclose Your personal information as part of a research study without Your specific and direct consent, unless required to do so by law, regulation, or other compliance reason.
• This authorization addresses Your health information only.  Please refer to Our Privacy Policy at https://joined.bio/privacy-policy for information about how We handle other personal data, such as Your contact information and account details.
• Various states have enacted privacy laws that may provide You with additional rights regarding Your health information.  Joined Bio complies with all applicable state privacy laws.  These state laws may provide rights such as the right to access, correct, delete, and obtain a copy of Your data.  If You are a resident of a state with specific privacy legislation, You may exercise any rights granted under Your state’s laws by contacting Us at privacy@joined.bio.  Joined Bio is committed to respecting the privacy rights of all users, regardless of their state of residence, and We apply privacy protections consistent with the highest standards required by state laws.

• You may contact Us at:

Joined Bio, Inc.
450 Bedford Street
Suite 2100
Lexington, MA 02420

Email:  privacy@joined.bio