RPV Standard Operating Procedures

The Process –

1. RPV will review the screener, fully program and recruit our panelists (digitally).
2. To begin the recruit, we need three items:
   1. The approved screener
   2. The moderator’s schedule
   3. The final patient recruitment grid format (if you don’t have one and want us to create it, that’s fine, too; just remember we can’t change it mid-recruit!)

3. RPV has an automatic schedule tool for those who qualify based on the moderator’s availability.
4. We prefer to have schedule blocks for recruiting assigned for RPV. See added costs for no RPV blocked times.
5. RPV will update you (the client) with all of the recruitment data (those who qualify and are scheduled, and all of those who don’t qualify and why) for review. We prefer to use our own master grid template. See added costs for client grid.
6. RPV will send reminders to target panel to fill recruit.
7. RPV will process and ship rewards for complete interviews and invoice once the study is complete.

Things to Note –

1. As of January 1, 2023, we will increase our patient honoraria from $100 to $120 per hour. The honoraria increase will be in effect for proposals that are written beginning on January 1. This will not impact studies commissioned prior to this date, and pricing will hold for 60 days for previously completed proposals.
2. Respondents get an initial confirmation email upon scheduling, a 24-hour to-interview reminder email, and IF they opt-in to one or both, a 24-hour text message reminder and/or 24-hour automated call reminder.
3. RPV prefers to pay our own completes.
4. RPV does not screen/recruit client lists.
5. RPV does not phone screen.
6. Please keep screeners short. If they last longer than 10 minutes, we need to compensate respondents for their time if they don’t qualify for the study. If additional screening is required, and it takes longer than 10 minutes, respondents who don’t qualify will be compensated at the same rate as for a study, at $120 per 60 mins.
7. We do not encourage raising the honoraria amount mid-study, as it creates bad practice for our panelists by encouraging them to wait for a higher incentive. If you feel you are recruiting a population with a low incidence rate, we recommend approving higher honoraria at the beginning of the study.
8. If you would like scheduling prioritized around certain dates/times, we find it helps to entice potential respondents with an extra reward ($25 is our standard). Please note, we cannot force respondents to select any date/time as a priority.
9. If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with Referral Partners and post ads on social media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.
10. RPV can attach homework, consent forms, interview instructions, dial-in info to the confirmation/reminder emails.
11. Please note that for any additional pre-work (e.g., tech-checks, set-up calls, homework) honoraria will be adjusted accordingly.
12. If you are doing in-home interviews, please contact the respondent prior to the interview to establish rapport and help them feel comfortable with inviting a stranger into their home.
13. Sometimes we are asked to recruit patients for a study we are already working on with another client. When we realize this, we will alert you immediately and the first client who has commissioned us is the one we will work with. However, with many studies on similar topics, and with multiple project managers, it is often difficult for us to know if we are already working on the same project. In that case, we may not know if it is a duplicate project until it is underway. We will need to charge for recruits obtained on duplicate projects. We ask you to let us know if the project has been commissioned to other companies to help us reduce the chances of this happening.

Added Costs –

1. Client Master Grids: RPV prefers to use our own grid template. We can use the client's grid, depending on the complexity there may be a +$500 charge to setup costs for this or we may not be able to accommodate usage. *No charge applied if RPV uses our own master grid template. We can easily add specific requests to the dataset, (time zones, moderators, quotas, etc.).
2. Google Doc Availability with no RPV block times: +$50 (per scheduled complete) if client cannot provide blocks of time for RPV recruitment.
3. Typing Tools: Average additional cost is +$500.
4. Referral Bonus: We can offer a referral bonus to respondents if they refer others who qualify and complete the research. The referral bonus is $125 which includes $100 to the referrer and a $25 administrative fee.
5. Referral Recruits via RPV Respondents: If you recruit respondents by referral or any other method from respondents that we have already recruited for you, we will consider these recruits from us and charge accordingly.
6. Additional Screeners: Cost may vary depending on length and complexity. This includes screener changes after the screener was initially programmed and the recruitment has gone live.
7. Screener Translations: Cost may vary depending on length. Standard costs would be $100 (per translation, in Word Doc form), $50 (per translation, in Excel form).
8. RPV will update the screener as necessary before going live. Once live, we will update the screener once more, free of charge. For any additional updates after that, a $60 (per hour) fee may apply for added programming adjustments.
9. Reschedule Fees: +$50 (per reschedule) for anyone who must be rescheduled due to client/moderator change. *Does not apply if fault is on RPV or respondent.
10. Scheduling Later: If RPV is requested to recruit, allow for client review, then schedule (where we cannot use our auto-Schedule Tool after screening), we will apply +$50 per scheduled complete.
11. Additional Schedule Tool: If we are requested to schedule tech checks, or any other second schedule (aside from scheduling respondent’s interviews) there will be an additional setup cost of $300.
12. Homework (Pre/Post): +$25 (per Complete) for homework. *Example, if there is a 15-minute pre AND post work activity, that would be +$50 (per). If homework is 60-minutes or more, the additional charge will be +$125 (per).
13. Document Editing: If RPV is required to edit consent forms, COD, or other collected documents such as redacting PII, we will apply an additional $25 charge (per document).
14. Canceled Interviews: If you need to cancel a patient who has been recruited and meets the screening criteria and/or has been approved by you, the recruiting charge will apply. If the cancellation is within one business day of the scheduled time, we will pay the patient the incentive and that charge will also apply. If the respondent is canceled outside of one business day to their interview, we will request you compensate them $25 for their time.
15. Follow Up Interviews: $125 per follow up recruit for TDIs or WATIs, $225 per follow up recruit for in-person, FGs, or DYADs.
16. Client Recruit Cancellations: $25 reward (more than 24-hours to their interview) plus counted as additional recruit. Full reward for those 24 hours or less to their interview, plus counted as additional recruit.
17. Physician Confirmation: This adds time to the recruit (2 weeks or more) and will require additional recruiting costs ($100 per) and additional honoraria if the patient obtains it from their physician.
18. Follow Up Questions: If you require us to reach back out to screened respondents with additional questions, there is an additional charge of $25 (if information is client collected) or $50 (if information is collected by RPV) per respondent follow up (plus respondent gift card reward reflecting time spent).
19. Clinical Trials: $225 per qualified recruit. +$500 if consented to clinical trial.
20. If you wish to reopen a study after it has been officially closed, a $300 setup fee will apply. Depending on screener adjustments there may be additional programming costs of $60-per hour.

The Process –

1. RPV will request 4-5 key questions from the client’s screener to program.
2. RPV will update you (the client) all recruitment data for those who pass the few key questions via our master grid template.
3. Client is responsible for following up with potentials to fully screen and schedule.
4. Client will need to update RPV PM with where the recruitment is per quotas.
5. RPV will send reminders to target panel to fill recruit.
6. Client will provide RPV PM with list of final completes and then RPV will process and ship rewards for complete interviews and invoice once the study is complete.

Things to Note –

1. As of January 1, 2023, we will increase our patient honoraria from $100 to $120 per hour. The honoraria increase will be in effect for proposals that are written beginning on January 1. This will not impact studies commissioned prior to this date, and pricing will hold for 60 days for previously completed proposals.
2. *If you have a programmed screener to finish screening the potentials, you MUST use Option 3: Client Programmed Handover. RPV Programmed Handover (Option 2) is only for clients that phone screen the potentials.
3. RPV does not phone screen.
4. We do not encourage raising the honoraria amount mid-study, as it creates bad practice for our panelists by encouraging them to wait for a higher incentive. If you feel you are recruiting a population with a low incidence rate, we recommend approving higher honoraria at the beginning of the study.
5. RPV will not use client master grid, we use our own master grid template for RPV programmed handovers.
6. RPV PM will need client for contact info of the person/persons contacting the potentials so we can update the recruits with who to look out for with the next phase in screening/scheduling by client.
7. When calling to fully screen and schedule, please be sure to reference this is a Rare Patient Voice study (or WhatNext, if cancer), and reference our project number (ask the PM if not clear).
8. If client has trouble contacting RPV potentials, please contact RPV PM, we can follow up with the recruits.
9. Clients are not permitted to invite patients to sign up for future studies or to collect patient contact information for future use.
10. IF schedule tool is added - respondents get an initial confirmation email upon scheduling, a 24-hour to-interview reminder email, and IF they opt-in to one or both, a 24-hour text tessage reminder and/or 24-hour automated call reminder.
11. IF schedule tool is added – RPV will send consent forms, homework, etc., but client must follow up with recruits for anything pending.
12. RPV prefers to pay our own completes.
13. RPV does not screen/recruit client lists.
14. If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with referral partners and post ads on social media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.
15. Manual Scheduling: Rare Patient Voice can manually schedule up to n=3 respondents. A programmed scheduling tool is required for n=4 or more respondents. In both cases, once we update your team with the scheduled respondents, your team will be responsible for following up with reminders, collecting materials (e.g., consent forms), and rescheduling.
16. Sometimes we are asked to recruit patients for a study we are already working on with another client. When we realize this, we will alert you immediately and the first client who has commissioned us is the one we will work with. However, with many studies on similar topics, and with multiple project managers, it is often difficult for us to know if we are already working on the same project. In that case, we may not know if it is a duplicate project until it is underway. We will need to charge for recruits obtained on duplicate projects. We ask you to let us know if the project has been commissioned to other companies to help us reduce the chances of this happening.
17. Please keep screeners short. If they last longer than 10 minutes, we need to compensate respondents for their time if they don’t qualify for the study. If additional screening is required, and it takes longer than 10 minutes, respondents who don’t qualify will be compensated at the same rate as for a study, at $120 per 60 mins.

Added Costs –

1. Added questions past 4-5 key questions: Cost may vary depending on the number of added and the complexity.
2. Screener Translations: $0.20 per word.
3. Schedule Tool: RPV can schedule those who the client confirms qualify (+$300).
   1. IF Schedule Tool applies - Reschedule Fees: +$50 (per reschedule) for anyone who must be rescheduled due to client/moderator change. *Does not apply if fault is on RPV or Respondent.
   2. IF Schedule Tool applies - Google Doc Availability with no RPV blocks: +$50 (per scheduled complete) if client cannot provide blocks of time for RPV recruitment.
4. Referral Bonus: We can offer a referral bonus to respondents if they refer others who qualify and complete the research. The referral bonus is $125 which includes $100 to the referrer and a $25 administrative fee.
5. Referral Recruits via RPV Respondents: If you recruit respondents by referral or any other method from respondents that we have already recruited for you, we will consider these recruits from us and charge accordingly.
6. Homework (Pre/Post): +$25 (per Complete) for homework. *Example, if there is a 15-minute pre AND post work activity, that would be +$50 (per). If homework is 60-minutes or more, the additional charge will be +$125 (per).
7. Document Collection: RPV will apply +$25 to the recruitment fee (per complete) for documents that need to be collected (on RPV’s end), i.e. pre-work, post-work, homework, consent form, etc. *This added fee will not apply to a standard setup study as document collection is included.
8. Document Editing: If RPV is required to edit consent forms, COD, or other collected documents such as redacting PII, we will apply an additional $25 charge (per document).
9. Follow Up Interviews: $125 per follow up recruit for TDIs or WATIs, $225 per follow up recruit for in-person, FGs, or DYADs.
10. Canceled Interviews: If you need to cancel a patient that has been recruited and meets the screening criteria and/or has been approved by you, the recruiting charge will apply. If the cancellation is within one business day of the scheduled time, we will pay the patient the incentive and that charge will also apply. If the respondent is canceled outside of one business day to their interview, we will request you compensate them $25 for their time.
11. Client Recruit Cancellations: $25 reward (more than 24-hours to their interview) plus counted as additional recruit. Full reward for those 24 hours or less to their interview, plus counted as additional recruit.
12. Follow Up Questions: If you require us to reach back out to screened respondents with additional questions, there is an additional charge of $25 (if information is client collected) or $50 (if information is collected by RPV) per respondent follow up (plus respondent gift card reward reflecting time spent).
13. Clinical Trials: $225 per qualified recruit. +$500 if consented to clinical trial.
14. If you wish to reopen a study after it has been officially closed, a $300 setup fee will apply.

The Process –

1. For clients with the screener programmed on their end, RPV will send over our redirects for complete, disqualified, and over quota landing pages for the client to implement.
2. RPV will test client screener to ensure RPV redirects are working properly and RPV unique IDs are passed back to our landing pages.
3. RPV will invite target panel to client screener for recruitment.
4. Client will update RPV PM with where the recruitment is per quotas.
5. Client is responsible for scheduling and reminding recruits.
6. RPV will send reminders to target panel to fill recruit.
7. Client will provide RPV PM with list of final completes and then RPV will process and ship rewards for complete interviews and invoice once the study is complete.

Things to Note –

1. As of January 1, 2023, we will increase our patient honoraria from $100 to $120 per hour. The honoraria increase will be in effect for proposals that are written beginning on January 1. This will not impact studies commissioned prior to this date, and pricing will hold for 60 days for previously completed proposals.
2. Client cannot invite RPVs recruits to sign up to their panel (or with another recruiter).
3. RPV prefers to pay our own completes.
4. RPV does not screen/recruit client lists.
5. We do not encourage raising the honoraria amount mid-study, as it creates bad practice for our panelists by encouraging them to wait for a higher incentive. If you feel you are recruiting a population with a low incidence rate, we recommend approving higher honoraria at the beginning of the study.
6. If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with Referral Partners and post ads on social media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.
7. If client has trouble contacting RPV potentials, please contact RPV PM, we can follow up with the recruits.
8. Sometimes we are asked to recruit patients for a study we are already working on with another client. When we realize this, we will alert you immediately and the first client who has commissioned us is the one we will work with. However, with many studies on similar topics, and with multiple project managers, it is often difficult for us to know if we are already working on the same project. In that case, we may not know if it is a duplicate project until it is underway. We will need to charge for recruits obtained on duplicate projects. We ask you to let us know if the project has been commissioned to other companies to help us reduce the chances of this happening.
9. Please keep screeners short. If they last longer than 10 minutes, we need to compensate respondents for their time if they don’t qualify for the study. If additional screening is required, and it takes longer than 10 minutes, respondents who don’t qualify will be compensated at the same rate as for a study, at $120 per 60 mins.

Added Costs –

1. Schedule Tool: RPV can schedule those who the client confirms qualify (+$300).
   1. IF Schedule Tool applies - Reschedule Fees: +$50 (per reschedule) for anyone who must be rescheduled due to client/moderator change. *Does not apply if fault is on RPV or respondent.
   2. IF Schedule Tool applies - Google Doc Availability with no RPV blocks: +$50 (per scheduled complete) if client cannot provide blocks of time for RPV recruitment.
   3. IF Schedule Tool applies - Scheduling Tool with Sub Quotas: +$200 (Schedule Tool and Quotas added, $500 total).
2. Referral Bonus: We can offer a referral bonus to respondents if they refer others who qualify and complete the research. The referral bonus is $125 which includes $100 to the referrer and a $25 administrative fee.
3. Referral Recruits via RPV Respondents: If you recruit respondents by referral or any other method from respondents that we have already recruited for you, we will consider these recruits from us and charge accordingly.
4. Homework (Pre/Post): +$25 (per complete) for homework. *Example, if there is a 15-minute pre AND post work activity, that would be +$50 (per). If homework is 60-minutes or more, the additional charge will be +$125 (per).
5. Document Collection: RPV will apply +$25 to the recruitment fee (per complete) for documents that need to be collected (on RPV’s end), i.e. pre-work, post-work, homework, consent form, etc. *This added fee will not apply to a standard setup study as document collection is included.
6. Document Editing: If RPV is required to edit consent forms, COD, or other collected documents such as redacting PII, we will apply an additional $25 charge (per document).
7. Follow Up Interviews: $125 per follow up recruit for TDIs or WATIs, $225 per follow up recruit for in-person, FGs, or DYADs.
8. Canceled Interviews: If you need to cancel a patient that has been recruited and meets the screening criteria and/or has been approved by you, the recruiting charge will apply. If the cancellation is within one business day of the scheduled time, we will pay the patient the incentive and that charge will also apply. If the respondent is canceled outside of one business day to their interview, we will request you compensate them $25 for their time.
9. Client Recruit Cancellations: $25 reward (more than 24-hours to their interview) plus counted as additional recruit. Full reward for those 24 hours or less to their interview, plus counted as additional recruit.
10. Follow Up Questions: If you require us to reach back out to screened respondents with additional questions, there is an additional charge of $25 (if information is client collected) or $50 (if information is collected by RPV) per respondent follow up (plus respondent gift card reward reflecting time spent).
11. Clinical Trials: $225 per qualified recruit. +$500 if consented to clinical trial.
12. If you wish to reopen a study after it has been officially closed, a $300 setup fee will apply.

The Process –

1. Clients will have the full screener/survey programmed on their end.
2. RPV will send over our redirects for complete, disqualified, and over quota landing pages for the client to implement.
3. RPV will test client screener to ensure RPV redirects are working properly and RPV unique IDs are passed back to our landing pages.
4. RPV will invite target panel to client screener for recruitment.
5. Client will update RPV PM with where the recruitment is per quotas.
6. RPV will send reminders to target panel to fill recruit.
7. Client will provide RPV PM with list of final completes and then RPV will process and ship rewards for complete interviews and invoice once the study is complete.
8. Sometimes we are asked to recruit patients for a study we are already working on with another client. When we realize this, we will alert you immediately and the first client who has commissioned us is the one we will work with. However, with many studies on similar topics, and with multiple project managers, it is often difficult for us to know if we are already working on the same project. In that case, we may not know if it is a duplicate project until it is underway. We will need to charge for recruits obtained on duplicate projects. We ask you to let us know if the project has been commissioned to other companies to help us reduce the chances of this happening.
9. If any respondents are removed by the client due to speeding, straight-lining, open-ended answers, etc., we will request you provide the data so we can follow up with the respondents. If you cannot provide this data, we will invoice for their rewards and count as a recruit.
10. For surveys where respondents are asked to answer open-ended questions, you must provide clear directions (for instance, "please be descriptive and provide a few sentences with your answer"). If there are no directions to the open-ended question and the respondent’s data is removed at the end of the study, RPV will invoice for the respondent’s reward, but not count as a recruit.

Things to Note –

1. As of January 1, 2023, we will increase our patient honoraria from $100 to $120 per hour. The honoraria increase will be in effect for proposals that are written beginning on January 1. This will not impact studies commissioned prior to this date, and pricing will hold for 60 days for previously completed proposals.
2. RPV does not program quant surveys, but we can direct you to our partner company (Q One) who will.
   1. Link to Survey Programming Cost Tool: https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/index.php?surveyID=6bb3h20ajpd9&version=22386&id=284174feb9940a
3. RPV prefers to have our redirects implemented. If your programming team cannot implement them, we will (at least) need you to capture our unique IDs.
4. Clients must have quotas implemented to close down the recruit once the target number(s) are hit. Any over quotas respondents who complete the survey will be paid for their time, but not counted as a recruit.
5. Please make sure respondents who disqualify or are over quota, do so early in the screener. If we have respondents disqualify or over quota after passing the screening questions, we will need to compensate them for their time.
6. Client cannot invite RPVs recruits to sign up to their panel (or with another recruiter). Please be sure to remove all contact collecting or panel invitations. If you need to collect our respondent personal contact info, we will require that you sign our PII agreement.
7. RPV prefers to pay our own completes.
8. RPV does not screen/recruit client lists.
9. We do not encourage raising the honoraria amount mid-study, as it creates bad practice for our panelists by encouraging them to wait for a higher incentive. If you feel you are recruiting a population with a low incidence rate, we recommend approving higher honoraria at the beginning of the study.
10. If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with referral partners and post ads on social media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.

Added Costs –

1. Additional Links: RPV testing and implanting one survey link is included in the setup cost. Any additional survey link will be +$100 (per link) added to setup.
   1. Example – one patient link and one caregiver link = +$100 to set up.
2. Facial Recognition/Recording: +$25 to respondent reward.  If client disqualifies them after recording, respondent gets the $25 reward.
3. Follow Up Questions: If you require us to reach back out to screened respondents with additional questions, there is an additional charge of $25 (if information is client collected) or $50 (if information is collected by RPV) per respondent follow up (plus respondent gift card reward reflecting time spent).
4. Referral Recruits via RPV Respondents: If you recruit respondents by referral or any other method from respondents that we have already recruited for you, we will consider these recruits from us and charge accordingly.

Our standard payment terms are net 30 days. Upon the commissioning of the project, we invoice for 100% of the respondent incentives and the incentive processing fee, as we pay the respondents immediately upon completion of the study. We invoice the balance upon completion of the project.

Our Patient Advocacy Team (PAT) is ready to work on outreach to recruit patient and family caregivers required for your study. While we can not guarantee results, we will do our best to find the respondents you are looking for. If needed, here is what our PAT can do.

• PAT will promote studies and recruit respondents on social media via Facebook, Instagram, and TikTok.
• PAT will seek and reach out to relevant support and advocacy groups on social media, and follow up once if there is no initial response.
• PAT will email relevant referral partners a maximum of two times for each study.
• Upon client request, PAT will provide a detailed weekly email reporting on the outreach steps that have been taken.
• Please note that PAT is unable to provide referral partner names and information.