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    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Frequently Asked Questions from Clients

How is your pricing set up? Expand

For all of our studies we have a fixed set up fee and the other fees are paid per complete. See our link to our webpage or PAM for feasibility and pricing.

Can you get more patients than you are feasible for in the bid? Expand

Our outreach team has connections with over 2,300 referral partners who can help us find additional patients for studies. While we have had success with many conditions, we cannot guarantee anyone new for your study. We do not charge for outreach services. If you want to use paid ads on social media, please reach out to your project manager who can help facilitate this process. For more information about our outreach efforts, please click here.

How long does it take to recruit? Expand

We typically need two weeks to recruit. If we are recruiting on best efforts or are utilizing outreach, it is best to have a few extra weeks to recruit.

How do you screen patients? Expand

We send out an email to our patients that includes study information and a screener link. We do not screen by phone.

How many patients typically respond for a second wave. Expand

This varies from study to study. We typically see a 10% drop in the second wave.

I want RPV to schedule patients after they screened in and my team reviews their answers. Expand

If we are using our standard set up we are happy to schedule patients after you have reviewed their screener questions. There will be an additional $50 per complete for us to manually schedule patients.

What do you charge for moderation? Expand

We do not provide moderation, translation, or tech checks.

What countries do you work in? Expand

We work in the United States, Canada, the United Kingdom, Italy, Spain, Germany, France, Australia, and New Zealand.

Can you recruit HCP’s or use a clients list to recruit? Expand

We work with patients and family caregivers. We do not recruit HCP’s or have a general pop panel. We do not recruit patients from a client list.

Can you reduce your fees or give us a price cut? Expand

We keep our prices standard across all clients. We even publish them on our website so everyone knows they are paying the same rate.

Why is your RR and IR so low? Expand

We keep our response rates as accurate as possible and are always cleaning our panels. We try to remove unresponsive patients so we can provide the most accurate feasibility possible. We modify our incidence rates based on the screening criteria you provide as well as our prior experience with similar projects.

When do you need to have materials to launch on the same day? Expand

We typically need materials by 3:30 PM ET.

If the screener is over 10 minutes do we need to pay patients for this? Expand

Patient time is valuable! We pay patients at a rate of $100 per hour. We compensate patients $20 for screeners which take patients more than 10 minutes. For screeners 15 minutes or more, patients earn $25.

What if I have multiple screeners for my study. Expand

For multiple screeners, additional set- up costs apply. Please let us know and we will provide updated pricing.

I just want your team to recruit patients. We will do everything else, so I do not see why I would need to pay a recruiting fee. Why am I paying for a follow up interview if you have already recruited these patients? Expand

We have a patient access fee for each phase of your study. We spend a great deal of time and money so we have these patients when you need them.

What is your wave fee for quants? Expand

We have a $500 set up fee for each wave of the study.

Can my team capture PII? Expand

We do not allow PII to be captured for quant studies. For qual studies, we will ask your team to sign our PII agreement to protect the patient and Rare Patient Voice.

Do you screen by phone? Expand

We screen patients by email. We do not screen over the phone. We are happy to have your team screen our patients by phone.

Do you charge extra for pre-tasks or homework? Expand

Yes, there will be an additional fee for each portion of the study. We have a patient access fee and will pay patients for their time.

How do you find your patients? Expand

We recruit patients and caregivers at patient events as well as through our referral program with advocacy organizations and support groups.

Do you have questions about an active project? Expand

For questions about an open study, please email  Ben Shedlock: ben.shedlock@rarepatientvoice.com.

Do you have questions about an invoice? Expand

For billing and invoice questions, please email Becky Michael: becky.michael@rarepatientvoice.com.

Latest Blog Posts

  • Weekly Warrior: Meet Kelsey
  • Need to raise funds for your org’s efforts? Join our referral program and let RPV help amplify your voice! 
  • Weekly Warrior: Meet Allie
  • Weekly Warrior: Meet Denise
  • A Thank You to Our Patients, Caregivers, and Patient Advocacy Group Partners

Check Out Our YouTube Channel!

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Rare Patient Voice

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Towson, Maryland 21286
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