What's New at Rare Patient Voice?
What suggestions do patients and family caregivers have for advertisers promoting medications through TV commercials? Earlier this year, RPV conducted a survey of 2,036 patients and family caregivers (loved ones helping with care) in the United States. Questions were about television advertising of treatments and medications. Here are some of the suggestions from patients and family caregivers that were shared in the presentation Rare Patient Voice’s Pam Cusick made at the DTC National Conference in April:
- Use actual patients in commercials - “Don’t have paid actors or actor portrayals. It’s offensive and turns me off to the product. If you can’t get real patients, your product is not ready for the public.”
- Be realistic - “Don’t depict Rheumatoid Arthritis patients doing everything. Small victories may resonate better. Like tying shoes, walking, using one’s hands for crafts.”
- Be honest - “I want real stories—clear successes but also honest "helps significantly but doesn't make everything all better." “I’d like to see real world situations - single moms, financial toxicity issues, patients working two-three jobs to make ends meet.”
- Don’t overpromise - “Most of us with chronic diseases aren't expecting a cure but would love an improvement in our quality of life. Focus on that.”
Read the Patient Perspectives on Direct-to-Consumer Television Advertising report in its entirety here.
News About Payments
Electronic direct deposit can be a faster, more convenient option for receiving payments. Effective immediately, after a Rare Patient Voice panel member completes a study and receives notification that a check has been sent, included in that notification will be a link the panel member may use to sign up for future electronic payments (ACH transfers). RPV is providing this option in conjunction with Inflow.
“The input of patients and family caregivers is vital to the development of new products, treatments, and approaches that can change lives,” said RPV President and Founder Wes Michael. “We are all about rewarding them for their time, and it’s important for the process to be as easy and user-friendly as possible. For some that will mean taking advantage of this new electronic direct deposit option, and for others it may mean receiving a check in the mail. It’s all about what works for our individual members.”
For more on this news, check out this announcement video from Wes.
We Value Your Time
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Susan!
Partner Corner
The Facebook community “Living with Follicular Lymphoma” is the largest gather of Follicular Lymphoma patients and their loved ones worldwide. This community is a safe space to learn, share information and connect with others with Follicular Lymphoma. As a community we are aiming to connect every Follicular Lymphoma patient worldwide because together we are strong and can achieve a lot more when it comes to patient care and support for each other in the community and those outside it. Together we can amplify patient voice to help drive awareness and the development of future treatments and eventually a cure for Follicular Lymphoma. You can find this support group by going to https://www.facebook.com/groups/flsupport.
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! This month, meet Michael Taylor, Senior Project Manager and Quality Assurance Manager for Rare Patient Voice.
Michael joined Rare Patient Voice in 2015 and currently works in a dual role as Senior Project Manager and Quality Assurance Manager. He earned a Bachelor of Arts in Psychology from Chestnut Hill College and prior to joining RPV, served in the patient care field, working in a group home for individuals with behavioral diagnoses. That experience led him to a passion for meeting and talking to people who have signed up with RPV and learning more about their diagnostic journey.
Mike is high on his job and also his colleagues. “My favorite part about working at Rare Patient Voice is the people I work alongside. The team we have here is wonderful and they help to create a great work environment.”
Reading, traveling, and spending time with his fiance and their dog and cat top the list of Mike’s interests. He’s also an active member of his local Ancient Order of Hibernians (AOH) chapter.
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.
1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com
2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.
Please feel free to share this page with friends or family who might be interested!
United States
Acute Hepatic Porphyria (AHP) patients United States
30-minute web-assisted phone interview, compensation is $60
Achondroplasia caregivers (children between the ages of 12-20) United States
60-minute web-assisted phone interview, compensation is $125
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Acute Lymphocytic Leukemia (ALL) patients United States
Year long study, 60-minute web-assisted phone interviews (WATI), compensation is $150 per interview
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Aortic Stenosis patients United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia (Cooley’s Anemia) (patients who do not receive regular transfusions as part of their medical treatment and must be able to provide proof of diagnosis) United States
60-90 minute web-assisted phone interview, compensation $75 for confirmation of diagnosis + $125 for interview
Bile Duct Cancer (Cholangiocarcinoma) or Stomach Cancer patients and caregivers United States
50-minute web-assisted phone interview, compensation is $100
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $120
Cervical Dystonia or Spasticity patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Myasthenia Gravis, Myopathy patients (in the Chicago area) United States
75-minute in-person interview $175
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Congenital Adrenal Hyperplasia (CAH) caregivers (children between the ages of 1-17) United States
60-minute web-assisted phone interview, compensation is $120
Cytomegalovirus (CMV) patients and caregiver United States
60-minute web-assisted phone interview (WATI), compensation is $120
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Gestational Diabetes patients United States
30-minute web-assisted phone interview, compensation is $60
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Hemophilia caregivers of children 17 years old United States
60-minute web-assisted phone interview, compensation is $100
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
High Cholesterol patients (currently on Repatha) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Huntington's Disease patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Limb Girdle Muscular Dystrophy (LGMD) patients United States
60-minute web-assisted phone interviews, compensation is $100
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
Multiple Sclerosis (MS) male patients (21-65 years) United States
35-minute online survey, compensation is $70
Myasthenia Gravis (MG), Neuromyelitis optica (NMO), or Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
60-minute web-assisted phone interview, compensation is $120
Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
Non-Small Cell Lung Cancer (NSCLC) AAPI female patients or caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Non-Small Cell Lung Cancer (NSCLC) patients (22+ years diagnosed within last 2 years) or caregivers United States
30-minute web-assisted phone interview (WATI), compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview (WATI), compensation is $200
Prostate Cancer patients United States
60-minute web-assisted phone interviews, compensation is $150
Relapsing Remitting MS (RRMS) patients (naive to Disease-modifying therapies (DMTs)) United States
60-minute web-assisted phone interview (WATI) plus 15-minute homework assignment, compensation is $200
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Canada
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
France
Head and Neck Cancer patients and caregivers France
60-minute web-assisted phone interview, plus diary prework (5-minutes per day for 10 days, compensation is 120 EUR
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Germany
Head and Neck Cancer patients and caregivers Germany
60-minute web-assisted phone interview, plus diary prework (5-minutes per day for 10 days, compensation is 120 EUR
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
As of January 1, 2023, you will earn $120 per hour (typically) for participating in new studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $13 million dollars since 2013 for participating in research studies.
