This Privacy Policy governs how Rare Patient Voice, LLC collects, stores, and uses your data within the company and its website located at rarepatientvoice.com.
Our Privacy Pledge
When you participate as a panel member, your privacy is assured.
- We will not make any personal information of our panel members available to anyone without your knowledge (as described in this policy), except in the rare instances required by law.
- We will never try to sell you anything – that is not our business.
- Occasionally, we may contact you to validate responses. We will never misrepresent ourselves or what we are doing.
- Your decisions about participating in a study, responding to specific questions, or discontinuing participation will be respected without question.
1. Information We Collect
Rare Patient Voice, LLC provides survey respondents with the opportunity to express opinions and attitudes about healthcare issues.
When you register as member of Rare Patient Voice, we collect the following personal identifying information: your name, postal service address, email address, IP address, and phone number. We also collect the following information to better target you for the appropriate surveys: patient or caregiver status, gender, birth year, race/ethnicity, preferred language, disease/condition, disease type/subtype, medications, and devices.
| Information Collected | How Information is Used | Lawful Use | ||
| Name Phone Number Email Address |
Collected by Rare Patient Voice during registration of new members and used to contact you regarding updates and opportunities to participate in surveys.
Never disclosed. |
Consent - provided by you to Rare Patient Voice at time of registration. | ||
| Name Phone Number Email Address Additional information related to the specific study. |
Collected during the screening process for certain studies for use by clients while conducting these studies.
Disclosed to clients for use in contacting you directly to participate in select studies. |
Consent - provided by you to Rare Patient Voice during the screening process. | ||
| Patient/Caregiver status Gender Birth year Race/ethnicity Preferred language Disease/condition Disease type/subtype Medications Devices |
Collected by Rare Patient Voice at time of registration and used to target you for appropriate surveys.
Never disclosed directly to any third parties. |
Consent - provided by you to Rare Patient Voice at time of registration. | ||
| Name Mailing Address Email Address |
Collected by Rare Patient Voice for the processing of compensation.
Disclosed at time of payment to third party payment processor to process payment on behalf of Rare Patient Voice. |
Consent and/or Legitimate interests - for the processing of compensation. | ||
| Social Security Number (SSN) | Collected by Rare Patient Voice for IRS reporting – 1099. Collected only for individuals receiving $600 or more in compensation in a single calendar year. | Consent and/or Legitimate interests - for the processing of compensation. | ||
| Name Phone Number Email Address |
Collected by Rare Patient Voice during registration and participation in surveys.
In rare circumstances when an adverse event is identified during a study, this data is disclosed to our client as required by law to contact you for the reporting of such adverse events. |
Consent - provided by you to Rare Patient Voice at time of registration. | ||
| IP Address History Geolocation data |
Collected by Rare Patient Voice from your browser to confirm your country.
Never disclosed. |
Consent and/or Legitimate interests - for the processing of registration and study targeting. |
We may disclose your Personal Information to a third party for a business purpose. When we disclose Personal Information for a business purpose, we enter into a contract that describes the purpose and requires the recipient to both keep that Personal Information confidential and not use it for any purpose except performing the contract.
We retain all information in our systems until specifically requested by you to delete it.
2. Information Collected in Surveys
Rare Patient Voice asks panel members for their opinions about a variety of products and services by asking them via email to complete surveys on behalf of our clients. Surveys may be programmed or hosted by third parties, who may collect the survey data. Clients list the general demographic requirements (such as age range and health condition) of individuals that they want to participate in a survey. Based on the client’s needs, Rare Patient Voice contacts individuals who have registered and invites them to participate.
Like all other information we collect, any additional information collected for a specific survey will be used for research purposes only. In most cases, this information will be name and telephone number so that you can be contacted for a telephone or webcam interview. Sometimes your email is included to schedule the interview. Our partners sign a legal agreement that they will only use this information for those specific purposes.
By registering on the www.rarepatientvoice.com site, you agree to receive emails from us, such as survey invitations and reminders, responses to inquiries that you submitted on our site, and inquiries regarding your status as a Rare Patient Voice member.
Patient Voice will never provide your payment details to our clients. Some clients who pay you directly will collect payment details during the study. If Rare Patient Voice spins off all or part of its business, or in the event of a bankruptcy proceeding, it might convey its business assets, including survey participant data. If a change of ownership occurs, all members will be notified.
3. Email Communications from Rare Patient Voice
Rare Patient Voice does not send unsolicited commercial emails. Rare Patient Voice voluntarily complies with the key privacy and disclosure provisions of the U.S. CAN-SPAM Act, including:
- providing truthful sender information;
- including a physical address for Rare Patient Voice or the Rare Patient Voice affiliate sending the email message; and
- providing a clear and simple opt-out method which is honored within ten (10) business days after the opt-out request is made.
In addition, all survey invitations sent via email are consistent with the Insights Association Code of Standards and Ethics for Marketing Research and Data Analytics.
4. Changing the Personal Information You’ve Provided
If you wish to change any personal information you provided during registration, you can do that in your profile. If you wish to change information you provided during a survey, you should contact your project manager. You can always contact us at privacy@rarepatientvoice.com.
5. Opt Out Policy
Panel members may decline to respond to a survey or opt to drop panel membership at any time. We respect the decision to decline participation and will not try to dissuade you. Panelists who prefer not to complete a given survey need not do so. If you choose to stop participating in our research surveys, you may unsubscribe from our survey invitations at any time by clicking here: https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/index.php?surveyID=u8n7uoine84e&published&id=privacypolicy
Once you have unsubscribed, you will not be invited to any further studies. Please be aware that even if you unsubscribe, we may maintain certain information in your registration profile for ordinary business purposes such as for tax purposes and to keep a record that you opted out.
6. Safety and Security
We use various measures to secure your data. We use HIPAA-compliant secure file sharing service to transmit data. We have implemented technical safeguards to protect Personal Data from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. For example, electronically stored Personal Data is stored on a secure network with firewall protection, and access to our electronic information systems requires user authentication via password. We also employ access restrictions, limiting the scope of employees who have access to Personal Data. We use secure encryption technology to protect certain categories of personal data.
Please note that information submitted on the www.rarepatientvoice.com site or otherwise sent to Rare Patient Voice over the Internet may be transferred outside of the United States and outside of the European Economic Area (EEA), where data protection laws are not as strong as within these areas. Additionally, the United States does not place restrictions on the transfer of personal data outside of the United States. If you have any concerns in relation to such transfers, you should not use the Internet as a means of communication with Rare Patient Voice.
7. Children’s Privacy
Rare Patient Voice believes that it’s especially important to protect children’s privacy online. Rare Patient Voice complies with the U.S. Children’s Online Privacy Protection Act of 1998 (“COPPA”). We do not seek to collect any personal information from children under 16 years of age. During the profile registration process, we collect birth year, and if an individual enters a birth year that indicates the individual is under 16, we block the registration and any personal information submitted by the individual is not saved in our database.
8. Cookies
Rare Patient Voice uses cookies on our registration and survey forms during the time you are actively completing the forms. The system uses cookies for all areas where a log in is required and on surveys in order for a survey site to operate correctly. For example, we use cookies to authenticate you. When you open a survey, authentication cookies are set, which let us know who you are when responding to our surveys. To participate in our studies you must accept cookies.
9. Other Websites
When patients and caregivers participate in a survey, they will be transferred to a partner site for survey completion. When this occurs the privacy policies and practices of that web site will apply.
10. Contact Information
If you have any questions or comments please do not hesitate to contact us at:
Via Email:
privacy@rarepatientvoice.com
Via Postal Mail:
Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286
Via Phone:
410-218-0527
11. For California Residents
This PRIVACY STATEMENT FOR CALIFORNIA RESIDENTS supplements the information contained in the Privacy Policy of Rare Patient Voice, LLC (RPV). We adopt this statement to comply with the California Consumer Privacy Act of 2018 (“CCPA”) and other California privacy laws. Any terms defined in the CCPA have the same meaning when used in this statement.
Sharing Personal Information
We disclose your Personal Information for a business purpose to the following categories of third parties:
- Our business partners
- Government entities as required by law for 1099 reporting
Your Rights and Choices
Pursuant to the CCPA and subject to certain exceptions and limitations, California residents may contact us to exercise their rights with respect to certain Personal Information that we hold about them.
To the extent these rights may apply to you, they are described below.
Right to Know About Personal Information Collected, Disclosed, or Sold
You have the right to request that we provide you with details about the Personal Information we collect, use, disclose and sell.
Only you or a person registered with the California Secretary of State that you authorize to act on your behalf, may make a verifiable request related to your Personal Information.
As part of this process, we may ask to verify your identity. Your request must:
- Provide sufficient information that allows us to reasonably verify you are the person about whom we collected Personal Information or an authorized representative.
- Describe your request with sufficient detail that allows us to properly understand, evaluate, and respond to it.
We cannot respond to your request or provide you with Personal Information if we cannot verify your identity or authority to make the request and confirm the Personal Information relates to you. Making a verifiable request does not require you to create an account with us. We will only use Personal Information provided in a verifiable request to verify your identity or authority to make the request.
You are entitled to receive the following:
- The categories of your Personal Information that we have collected in the preceding 12 months
- The categories of sources from which that Personal Information was collected
- The business/commercial purpose for the collection or selling
- The categories of third parties with whom we share Personal Information
- The specific pieces of Personal Information we have collected about you (subject to some exceptions)
Because we have disclosed or sold (as those words are defined in the CCPA) Personal Information to third parties in the last 12 months, you are also entitled to receive:
- The categories of Personal Information that we have disclosed or sold in the past 12 months
Right to Request Deletion of Personal Information
You have the right to request deletion of the Personal Information we have collected about you (subject to some exceptions). You can submit your request as described above, and we reserve the right to conduct the verification described above.
We may deny your deletion request if retaining the information is necessary for us or our service providers to:
- Complete the transaction for which we collected the personal information, provide a service that you requested, or take actions reasonably anticipated within the context of our ongoing business relationship with you.
- Detect security incidents, protect against malicious, deceptive, fraudulent, or illegal activity, or prosecute those responsible for such activities.
- Debug products to identify and repair errors that impair existing intended functionality.
- Exercise free speech, ensure the right of another consumer to exercise their free speech rights, or exercise another right provided for by law.
- Comply with the California Electronic Communications Privacy Act (Cal. Penal Code § 1546 seq.).
- Engage in public or peer-reviewed scientific, historical, or statistical research in the public interest that adheres to all other applicable ethics and privacy laws, when the information’s deletion may likely render impossible or seriously impair the research’s achievement, if you previously provided informed consent.
- Enable solely internal uses that are reasonably aligned with consumer expectations based on your relationship with us.
- Comply with a legal obligation.
- Make other internal and lawful uses of that information that are compatible with the context in which you provided it.
Right to Non-Discrimination for the Exercise of a Consumer’s Privacy Rights
We will not discriminate against you for exercising any of your CCPA rights. Unless permitted by the CCPA, we will not:
- Deny you use of our services.
- Provide you a different level or quality of services.
Right to Opt-Out of Sale of Personal Information
You have the right to opt-out of the sale of your Personal Information. You can submit a request by clicking here. You can also submit a request via the methods noted below:
Response Timing and Format
We endeavor to respond to a verifiable request within 45 days of its receipt. If we require more time (up to 90 days), we will inform you of the reason and extension period in writing.
We will deliver our written response by mail or electronically, at your option.
Any disclosures we provide will only cover the 12-month period preceding receipt of a verifiable request. The response we provide will also explain the reasons we cannot comply with a verifiable request, if applicable.
We do not charge a fee to process or respond to your verifiable request unless it is excessive, repetitive, or manifestly unfounded. If we determine that the request warrants a fee, we will tell you why we made that decision and provide you with a cost estimate before completing your request.
12. EU General Data Protection Regulation (GDPR) Rights
Right to Access (Article 15)
You have the right to obtain from us confirmation as to whether or not your personal data is being processed by us and receive information about that data.
Right to Rectification/Correction (Article 16)
You have the right to access your information and to correct, amend or delete inaccurate information.
Right to Erasure (Article 17)
You have the right to request that your information be deleted from our systems.
Right to Restriction of Processing (Article 18)
You have the right to request that we stop processing your information at any time.
Right to Data Portability (Article 20)
You have the right to request a copy of the personal data you provided to us in a structured, commonly used and machine-readable format. You may also request that we transfer a copy of your personal data to another controller where technically feasible.
Right to Object (Article 21)
You have the right to object to the processing of your personal data at any time.
Right to file a complaint
You have the right to file a complaint with a supervisory authority.
13. Exercising Your Rights
To exercise your CCPA or GDPR rights, please contact Rare Patient Voice:
- Via email – privacy@rarepatientvoice.com
- Via Postal Mail – Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286 USA
- Via Phone – (410) 218-0527
When contacting us to exercise your rights, you must include the following information so that we may verify your identity prior to taking action.
- Name
- Phone
- Project number (optional but helpful)
We will send you a follow up email to confirm your identity prior to fulfilling your request.
14. Changes to this Policy
This Notice may be amended from time to time, consistent with applicable data protection and privacy laws and principles. We will notify panel members if we make changes that materially affect the way we handle Personal Information previously collected, and we will allow them to choose whether their Personal Information may be used in any materially different manner.
15. Effective Date
This privacy policy is in effect as of June 1, 2021.
