Participant Consent & HIPAA Authorization
HIPAA Authorization for Collection of Demographic Information
Purpose: By submitting the registration form, you agree to allow AspireCURES to collect and store your demographic information, which may include your age, sex, race, ethnicity, zip code, language preference, and other relevant data. This information may be used to match you with potential clinical trials, research studies and/or treatment options.
Use of Information: Your data will only be used for:
- Clinical trial matching
- Outreach for research opportunities and matching
- Treatment options and matching
- Reporting aggregate statistics for health equity and inclusion
- Internal operations related to improving patient services
Confidentiality: We are committed to safeguarding your personal information. All collected data will be stored securely and will only be accessed by authorized personnel in accordance with HIPAA regulations.
Your Rights:
- You may decline this authorization. If you choose not to give it, we may not be able to provide matching services.
- You may revoke this authorization at any time by submitting a written request to heidi@aspirecures.com.
Authorization Duration: This authorization is valid for the term of your matching interest or until revoked in writing.
Consent to Participate and Waiver of Liability
AspireCURES, LLC Clinical Trial, Research Study & Treatment Options Matching Program
This Consent and Waiver (the "Agreement") is entered into between the individual who submits the registration form ("Participant") and AspireCURES, LLC ("Company"). Under this agreement, the "Company" is acting as a Recruitment Facilitator.
By submitting the registration form, the Participant voluntarily consents to participate in the Company's Matching Program (the "Program") under the following terms and conditions:
Consent to Collection, Use, and Disclosure of Information
The Participant authorizes the Company to collect, access, use, and disclose the Participant’s personal, demographic, health, and medical information ("Personal Information") solely for purposes of:
- Assessing eligibility for clinical trial opportunities, research studies, and treatment options.
- Matching the Participant with clinical trial opportunities, research studies, and treatment options.
- Communicating relevant opportunities to the Participant.
The Company will protect Personal Information in accordance with applicable laws, including HIPAA where applicable.
Voluntary Participation and No Guarantee
Participation is voluntary and does not guarantee:
- Matching with a clinical trial, research study and/or treatment option(s).
- Eligibility or enrollment into any clinical trial or research study.
- Acceptance by trial sponsors or investigators.
No Provision of Medical Advice
The "Company" does not provide medical advice, diagnosis, or treatment. Participants should consult licensed healthcare providers regarding decisions. The "Company" is not responsible for trial outcomes.
Waiver and Release of Liability
Participants waive and release the Company from any claims arising from participation in the Program or any clinical trial, research study and/or treatment including consequences arising from participation or non-participation.
Use of De-Identified Information
Participants consent to the use of de-identified information for clinical trials, research studies, analytics, and program development. AspireCURES, LLC does not guarantee complete privacy if the participant has a relationship with a third party.
Withdrawal
Participants may withdraw at any time by contacting AspireCURES, LLC.
Privacy Notice for Patients
Information We Collect
- Personal Identifiers (name, DOB, contact info)
- Health Information (medical history, diagnoses)
- Demographic Information (gender, ethnicity, location)
- Communication Preferences
How We Use Information
- Assess clinical trial eligibility, research study eligibility, and potential treatment options
- Match to clinical trials, research studies, and potential treatment options
- Communicate about opportunities
- Improve services using de-identified data
How We Share Information
- Clinical trial sponsors and investigators
- Service providers (under confidentiality agreements)
- Regulatory authorities as required
- No sale of personal information
Data Security
Appropriate safeguards are implemented to protect your information.
Your Rights
- Access, correct, or delete your information
- Withdraw consent
By enrolling in the matching program, you may receive links to other websites. Clicking on one of these links will take you to that website for which AspireCURES, LLC has no responsibility. We encourage you to read the privacy statements on all such sites as their policies may be different from ours.
Terms of Service
Program Description
The Program provides informational matching to potential clinical trials, research studies and/or treatment options. Final eligibility and enrollment are determined by third-party sponsors.
No Medical Advice
The Program provides information only and does not replace medical consultation.
User Responsibilities
- Provide accurate information
- Comply with laws
- Acknowledge voluntary participation
Privacy
Information use is governed by our Privacy Notice.
Intellectual Property
All Program content is the property of the Company.
Disclaimer of Warranties
The Program is provided "as is" without warranties.
Limitation of Liability
Company disclaims liability for damages arising out of participation.
Indemnification
Participants agree to indemnify the Company from any claims arising from their participation.
Governing Law
These Terms are governed by the laws of the United States.
Modifications
AspireCURES, LLC reserves the right at any time and without notice to change this policy simply by posting such changes on our site. Any such change will be effective immediately upon posting.
Notice of Data Breach Policy
At AspireCURES, LLC, protecting your personal and health information is a top priority. AspireCURES, LLC will respond if there is a breach involving your information, as listed below.
What Constitutes a Breach
A breach occurs when your personal, demographic, or health information is accessed, disclosed, or used in a way that is unauthorized and compromises the security or privacy of your information.
Examples may include:
- Unauthorized access by employees or third parties
- Theft or loss of devices containing your information
- Cyberattacks or hacking incidents
- Accidental sharing of your information with the wrong recipient
Our Commitment to Notify You
If we discover a breach involving your unsecured personal or health information, we will notify you as required by applicable federal and state laws.
Notification will occur without unreasonable delay, and no later than:
- 60 calendar days after discovery of the breach (for breaches involving health information under HIPAA);
- As otherwise required under state data breach notification laws.
Method of Notification
We will notify you by one or more of the following methods:
- Written notice mailed to your last known mailing address
- Email notification (if you have consented to electronic communications)
- Public posting or other methods if direct notification is not feasible
Information Included in Breach Notice
Our notification will include, at a minimum:
- A description of the breach (what happened and when)
- A description of the types of information involved
- Steps you should take to protect yourself from potential harm
- What we are doing to investigate and mitigate the breach
- Contact information for you to obtain further information
Steps We Will Take
In the event of a breach, we will promptly:
- Investigate the circumstances of the breach
- Contain and mitigate any harm
- Notify affected individuals as required
- Notify regulatory authorities if applicable (e.g., U.S. Department of Health and Human Services for PHI breaches)
- Review and strengthen our data security practices as needed
Your Rights
You have the right to:
- Receive timely notice of any breach involving your unsecured information
- Receive assistance in understanding any actions you should take to protect yourself
- Request additional information about the breach investigation
Florida Information Protection Act (FIPA)
AspireCURES, LLC must comply with federal laws and Florida state data breach laws.
What Is Protected
Florida protects "Personal Information", which includes:
- First name or first initial plus last name and one or more of:
- Medical history, mental or physical condition, or medical treatment or diagnosis
Notice to Individuals
The notice will include, as required by Florida state law:
- The date, estimated date, or date range of the breach
- A description of the personal information that was accessed or acquired
- Contact information (email, phone, address)
- A brief description of the actions taken to investigate, mitigate, and prevent future breaches
- Advice on how the individual can protect themselves