Thank you for your interest. Please begin by applying to join the panel here: https://rarepatientvoice.com/patient-and-caregiver-sign-up/
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.
As we receive studies that match the conditions/diseases you are professionally diagnosed with as listed on your profile, we will automatically email you invitations to those studies. If your mobile number is validated in our system, we can also send invitations to you via text, depending on the study. Please know that it is always fine to skip a study.
Your dashboard may not be updated until we have received notification from the study sponsor that the study is completed. Please know that projects payout when studies are fully completed; that is typically 3-6 weeks after you have finished your work. Projects pay out when they close; typically, that is 3-6 weeks after you do your work.
There are a number of reasons why you may not have qualified for a study, including the possibility that the number of respondents for that study has been reached. If you’d like to know the reason you didn’t qualify, please reach out to the point person (often referred to as the project manager) identified for questions.
You may receive these invites because you noted a condition in your profile which may relate to this research opportunity’s target condition. At times, we need to reach out to large groups of people to find matches for their specific research needs. We understand this study may not be a good fit for you, and it is always fine to skip a study.
If this study does not appear to be a good fit for you, please click on the Study Reminder Opt Out Link at the bottom of your email invitation.
If you are having trouble, first please try clearing your browser cookies and cache, and also make sure you are not using a VPN. If you are still having issues, copy and paste the study link and open it in a different browser, preferably in an incognito/private window. Finally, please try accessing the link on a laptop or computer, even if the invitation stated that the link is mobile friendly.
Please email your request regarding a referral to: patientadvocacyteam@rarepatientvoice.com
You can now register from any country, though our current focus is on the US, Canada, UK, France, Germany, Italy, Spain, Australia, and New Zealand. If you reside elsewhere, please select "other country" from the dropdown menu during registration. Although we may not have studies available for you immediately, signing up now ensures you'll be ready to participate when studies become available in your country.
Yes, an email address is necessary to participate. We send all the invitations by email. If your mobile number is validated in our system, we can also send invitations to you via text, depending on the study.
If you would like to view and update your profile, please follow the link below:
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/memberdashboard.php
- To update your profile with a new or existing professionally diagnosed condition/disease, type it into the search box and the condition/disease will pop-up in the drop-down menu, then select the correct box.
- Be sure to delete what you have typed in the search box and type another condition/disease and so forth for all conditions/diseases.
- If you do NOT see it listed, you can place it under 'other' and then type it in manually.
Rewards are sent once the study is complete. However, if a study goes on longer than usual, we do pay respondents to-date. For more details, contact the project manager for that study.
Once a study is fully completed, meaning every patient or caregiver has finished the survey or interview, the study sponsor notifies us. That is when the study is considered completed, or “closed.” Participants are paid for projects the week after the project closes. Typically, that is 3-6 weeks after completing your survey. The first payment is sent to you as a check. After you receive that first check and we can see it has been deposited/cashed, you can request payment by ACH deposits moving forward.
Most banks honor checks within six months of their being dated. If you find an uncashed check from RPV that is older, please contact us at research@rarepatientvoice.com.
Once you have cashed/deposited at least one check with us, please contact research@rarepatientvoice.com to request ACH electronic deposit moving forward.
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.
Incheck is a division of Inflow, and it is the entry you will see in your bank account if you receive electronic ACH payments.
If you earn $2000 (USD) or more in a calendar year, we are required by law to collect your Social Security number for IRS reporting (Form 1099). Please note that this $2000 includes both referral fees and study payments combined.
No, we never sell your data. To learn more, visit: https://rarepatientvoice.com/for-patients/how-we-use-your-information/
No, we will never sell you anything or give your name to anyone who will.
As we receive studies that match the conditions/diseases you are professionally diagnosed with as listed on your profile, we will automatically invite you to those studies via email. You may not hear from us for a few months, aside from our monthly newsletter, or you may get two emails a week. Please know that it is always fine to skip a study.
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.
The client receives only respondent ID numbers, not your personal information. RPV is notified only upon your study completion. We do not have access to your study answers.
Rare Patient Voice uses your email address to invite you to healthcare 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 research purposes only. Rare Patient Voice does not see your survey or interview responses.
If you would like to login, please follow the link below:
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/memberdashboard.php
To reset your password, please follow the link below:
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/memberpasswordreset.php
Please take a moment to check your spam or junk email folder. If you still don’t have the email, please contact: panelmanagementteam@rarepatientvoice.com.
You can't change your email address outside the portal yourself. Please contact panelmanagementteam@rarepatientvoice.com for assistance.
Yes! Your information automatically saves when you click out of each text box.
Cookies are small bits of data stored on devices (computer, mobile phone, tablet, etc.) that recognize users. Each cookie expires after a certain period depending on what it's used for. We use cookies in order for the 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.
If your complaint is about a specific project, your initial invitation email includes the name and email of the project manager for you to reach out to. If you have a complaint regarding to our quality of service, surveys, honoraria payments, or have any concerns about our terms and conditions or privacy policies, we encourage you to get in touch with us via our Help Desk at https://rarepatientvoice.com/rpv-help-support/.
Feel free to reach out to us via our Help Desk at https://rarepatientvoice.com/rpv-help-support.
