Login, click your name at the top left, then account. After clicking Account, click Personal or Condition. From here you can change/update any of your signup information, including password change.
We currently have hundreds of studies open for patients and caregivers! To see some of the studies we are working to fill immediately, please click here.
Copy/paste the URL (to the link) in your web browser. If that does not work, simply contact the Project Manager on that particular Study.
Studies vary from client to client. We will invite you to every and all studies pertaining to you as they come our way.
Typically we send out all of the check rewards once the study is complete. However, if a study goes on longer than usual, we do pay respondents to-date. Contact the Project Manager on that particular study for this answer.
Inflow is a service that Rare Patient Voice works with that allows for easy monetary transactions to be sent to different recipients. Inflow uses the latest industry security standards so you may rest assured that your personal details are safe and secure.
Contact the Project Manager on that particular study (for referring to a study). For referrals to join the panel, please send them RPV's Signup Page.
Contact the Project Manager on that particular study. They can look up the status of your Unique Study Link and find out why.
We typically send check rewards. However, some smaller studies may be a Gift Card.
No, we never sell your data. We only use it to target you for the appropriate surveys.
No, we will never sell you anything or give your name to anyone who will. We send an email when we have a survey opportunity.
Yes, the survey sponsors only get ID numbers for respondents, never personal information. We at Rare Patient Voice will only know when you have completed so we can send you your reward, but we don't see any of your survey answers.
We only email you when we have a study. So you may not hear from us for a few months, or you may get two emails in a week.
If you earn $600 (USD) or more in one calendar year, we are required by law to obtain your social security number for IRS reporting (Form 1099).
You can now sign up from any country. Currently our work focuses on the US, Canada, UK, France, Germany, Italy, Spain, Australia, and New Zealand. If you live in a country other than those, please check "other country" in the sign up. We may not have studies for you at the moment, but you can sign up now and be able to participate in the future when we have studies in your country.
Many patients without bank accounts report the best way to cash a check is to endorse it over a trusted friend or relative who can deposit or cash it and give you the money. Also, some stores like Walmart cash checks.
Make sure you log in with the email address which you used to register at our panel. This is the same email address we use to send you survey invitations.
Click on the ‘Forgot password’ link on the log in page and enter the email address which you used to register at our panel. You can enter your registered e-mail on this page and click the Reset Password button - the new password will be e-mailed to you shortly.
Please check your spam folder if the email with the new password ended up there. If not, please contact firstname.lastname@example.org.
You can't change your email address outside the portal yourself. Please contact email@example.com.
Please contact us (firstname.lastname@example.org).
Here are a few tips and best practices that you should follow with your Rare Patient Voice panel member account and anywhere on the internet to keep your account and data safe and secure:
- Never share your password.
- Change the temporary password you received from us when registering.
- Create a strong password with digits and special characters. Tip: A long sentence is better than a short password.
- Don't use the same password for other websites.
- Frequently update your password.
- Keep your computer system, virus scanners, firewalls and software up to date.
- Use a secure browser like Chrome or Firefox.
- Always log out of your account.
- Scan your computer frequently for viruses.
- Don't open links in emails or open attachments of senders you don't know.
Rare Patient Voice uses your email address to invite you to market research studies and to contact you with information about honoraria you earned for participating in our studies. Rare Patient Voice does not forward your email address to third parties.
Your data and responses go directly to the client sponsoring the study and are used for market research purposes only. Rare Patient Voice does not see your survey or interview responses.
If you have a complaint regarding to our quality of service, surveys, honoraria payments, or if you have any concerns about our terms & conditions or privacy policies, we encourage you to get in touch with us, so we can try to resolve your complaint or concern as quickly as possible. Contact the project manager if your complaint is about a survey (you'll find their email address in the emails they have sent you about the project) and please include the project number. Or feel free to contact email@example.com.
Yes! Your information automatically saves when you click out of each text box.