Last Updated:  August 15, 2025

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.

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, ii) healthcare providers that have treated You; and/or iii) You directly;
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;
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; and/or
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.

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;
• Other information as available in Your medical record; and/or
• Other information provided by You directly.

All information will be protected and will only be shared with researchers in de-identified form.

HOW YOUR INFORMATION WILL BE PROTECTED

• Your health information will be de-identified before it is stored:
  • All personal information and other unique identifiers (name, address, email, contact information, medical record numbers, full zip code, IP address, etc.) will be removed.
  • A random participant ID will be assigned to Your de-identified health information.
• Your de-identified health information along with dates of service that are needed for study matching and execution 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 nor will they have access to Your participant ID.
• All researchers who use Your data are bound by Data Use Agreements that specify data privacy and security protections required by researchers.  Researchers are also prohibited from attempting to re-identify You.
• Your personal information, along with a copy of your participant ID, will be maintained in a separate database in secure, HIPAA-grade systems.  This information is only accessible by authorized Joined Bio personnel and will be used to re-identify You for study participation.

WHAT YOUR HEALTH INFORMATION WILL BE USED FOR

Joined Bio will use Your health information to:

• Match You with relevant research studies;
• Contact You when You match 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;
• Process and deliver rewards when You participate in research;
• Operate, manage, maintain, and improve Our services and platform;
• Contact You in response to feedback, comments, or questions or to provide You with other information related to Your account;
• Detect or prevent fraud; and/or
• Otherwise accomplish Our business objectives.

COMPENSATION MODEL

Your de-identified health information may be used for feasibility analysis and to match You to research studies.  After being matched to a study, if You choose to participate, You will be eligible for compensation as clearly communicated to You prior to Your decision to join the study.

Joined Bio may also receive compensation for the use of Your de-identified health information in studies; however, We will never sell or disclose Your personal information or identifiable health information with researchers or other partners without Your specific and direct consent, unless required to do so by law, regulation, or other compliance reason.

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 Your 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 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 account management 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, navigate to Your account management tab, and select “Delete Your health data.”
• When You request deletion of Your health data, We will delete all health data associated with Your account unless You have participated in a study.  If You have participated in a study, regulatory requirements prohibit complete deletion of Your health data, and We must retain de-identified data used in those research studies.  All links between Your account and the remaining de-identified health data will be broken, so no health data will be associated 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 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 account management tab, and select “Delete your 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.
• 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