What's New at Rare Patient Voice?
News to Start Off the Year
2024 is off to a busy start at Rare Patient Voice, with a number of milestones already met. We’re proud of these achievements and excited to continue to connect patients and family caregivers with opportunites to share their opinions - and get paid for it. At RPV, we take pride in being the gold standard in terms of service to our patients, family caregivers, and clients!
- The RPV Facebook page now has over 45,000 followers. Check it out at: https://www.facebook.com/rarepatientvoice
- The RPV YouTube channel now has over 5,000 subscribers. Sign up to subscribe at: https://www.youtube.com/rare-patient-voice
- We have now paid patients and family caregivers over $13 million for taking part in research studies since 2013. Learn more at: https://rarepatientvoice.com/rpv-starts-new-year-by-reaching-a-milestone/
Didn’t Qualify for a Study? We Still Value Your Time
We appreciate your participation and being part of the RPV community, even if you didn'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, Kimberly!
Partner Corner
The Center for Chronic Illness (CCI) is a 501(c)3 nonprofit organization promoting well-being and decreasing isolation for those impacted by ongoing health challenges through support and education. CCI provides free, virtual support groups facilitated by licensed mental health professionals for patients and their loved ones impacted by autoimmune diseases, rare diseases, invisible illnesses, physical disabilities, and chronic pain conditions. While based in Seattle, CCI support groups serve patients and their loved ones from all 50 states and a number of other countries. Additionally, CCI also provides periodic health education programs for patients and continuing education programs for chronic illness healthcare professionals. To learn more about CCI, visit www.thecenterforchronicillness.org.
Staff Spotlight
Get to know our team! This month, meet Ben Shedlock, Director of Field Operations for Rare Patient Voice.
After earning a BA in Business Marketing from Maryland’s Towson University, Ben joined Rare Patient Voice in 2014 alongside Wes Michael as the first full time team member. As Director of Field Operations, Ben connects patients and family caregivers with clients seeking to do research studies. He is the team leader in project management and lead contact with the project programming department, and feels strongly about RPV and his role within the organization.
“I really appreciate the family feeling Rare Patient Voice has built with our employees. I wouldn't change that for the world. I love empowering those in the RPV community to share their opinions by taking part in research. After working here for almost 10 years, I’ve seen how each individual has a story to tell, and it's nice to be able to help them share their voices.”
A winter fan, Ben looks forward to the second half of football season for the Pittsburgh Steelers to start playing, and also enjoys snowboarding and hockey. He loves music, mountain views, fine dining, and his pitbull, Zoe, all year long.
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 https://rarepatientvoice.com/for-patients/patient-and-caregiver-sign-up/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
Achondroplasia adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Acute Myeloid Leukemia (AML), Lymphoma, Multiple Myeloma patients who participated in a clinical trial for NK Cell therapy United States
120-minute web-assisted phone interview, compensation is $240
Alzheimer's Male Caregivers United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $160 for the interview and $50 for confirmation of diagnosis
Atrial Fibrillation (AFIB) or Peripheral Artery Disease (PAD) caregivers (Hispanic bilingual-Spanish & English) of patients (Hispanic bilingual-Spanish & English) with AFIB not caused by a heart valve problem or artificial heart valve between the ages of 18- 75 who are on Xarelto (rivaroxaban) or Peripheral Artery Disease (PAD) caregivers of patients between the ages of 18- 75 who are on Xarelto (rivaroxaban) United States
90-minute focus group via web-assisted phone interview, compensation is $150
Bladder Cancer (NMIBC) patients who use or have used Bacillus Calmette-Guérin (BCG) therapy United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer-Stage IV patients United States
4 Week Passive App Tracking, compensation is $120
Bone Marrow Transplant, Collagen Vascular Disease, Graft Versus Host Disease (GVHD), Organ Transplant or Systemic Sclerosis (Scleroderma) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Breast Cancer patients United States
This is a 5-minute online survey for free access to a medical record collection service.
Chronic Kidney Disease (CKD) Patients United States
30-minute online survey + confirmation of diagnosis required (COD), compensation is $110
Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
4 week passive app tracking, compensation is $120
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Crohn's Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Duchenne Muscular Dystrophy (DMD) Caregivers of Patients under age 5 United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer patients United States
75-minute web-assisted phone interview, compensation is $250
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hemophilia adult patients & caregivers Tempe/Phoenix, AZ or Sacramento, CA United States
60-minute in-person interview, compensation is $225
Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $180
Hidradenitis Suppurativa - male patients Ages 18-54 United States
20-minute online survey, compensation is $60
Hidradenitis Suppurativa (HS) patients United States
45-minute web-assisted phone interview, compensation is $90
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
Idiopathic Inflammatory Myopathies (IIMs) with one of the subtypes: Anti-Synthetase Syndrome (ASyS), Dermatomyositis (DM), or Immune-Mediated Necrotizing Myopathy (IMNM) patients (age 18+) United States
90-minute web-assisted phone interview, compensation is $165 for the interview + $25 for full screening
IgA nephropathy (Berger'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
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Infertility patients and donors United States
60-minute web-assisted phone interview, compensation is $120
Juvenile Arthritis (JA) or Giant Cell Arteritis (GCA) adolescent patients or caregivers of adolescents United States
60-75-minutes in-person interview, compensation is from $150
Kidney Disease: Immune Complex-Mediated Membranoproliferative Glomerulonephritis (IC-MPGN, ICGN, Ig-MPGN) patients & caregivers United States United States
60-minute web-assisted phone interview, compensation is $120
Leukemia or Non-Hodgkin's Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
Liver Disease (not hepatitis): NASH patients ages 18+ United States
30-minute online survey, compensation is $44
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC)-Stage IV patients United States
60-minute web-assisted phone interview, compensation is $120
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Lyme Disease patients diagnosed within the last year United States
60-minute web-assisted phone interview, compensation is $175
Macular Telangiectasia (MacTel) patients United States
60-minute web-assisted phone interview, compensation is $120
Melanoma, Non-Small Cell Lung Cancer (NSCLC) patients United States
25 minute online survey, compensation is $50
Metastatic Breast Cancer Patients United States
30-minute web-assisted phone interview, compensation is $60
Mitochondrial Myopathy Patients United States
60-minute web-assisted phone interview, compensation is $125
Multiple Sclerosis (MS) Patients under 35 United States
60-minute web-assisted phone interview, compensation is $120
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Myasthenia Gravis caregivers United States
45-minute online survey, compensation is $90
Myasthenia Gravis (MG) patients (diagnosed in last 2 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Neuromyelitis Optica (NMO) Patients United States
45-minute online survey, compensation is $90
Non-Small Cell Lung Cancer (NSCLC) Patients United States
40-minute online survey, compensation is $80
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Opioid Addiction patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Ornithine Transcarbamylase Deficiency (OTC) patients & caregivers United States
60-minute web-assisted phone interview, compensation is $180
Ovarian Cancer Patients & Caregivers United States
15-minute online survey, compensation $80
Ovarian Cancer Patients & Caregivers United States
15-Minute online survey, compensation $30
Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30
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)
Pediatric Bone Marrow Transplant (BMT) (Stem Cell Transplant) caregivers for patients under age 18 United States
60-minute web-assisted phone interview, compensation is $120
Peyronie's Disease patients United States
in-person interviews
Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120
Psoriatic Arthritis patients United States
20-minute online survey, compensation is $40
Prurigo Nodularis patients United States
60-minute web-assisted phone interview, compensation is $175
Recessive Dystrophic Epidermolysis Bullosa patients ages 18+ and caregivers of patients ages 1-17 United States
60-minute web assisted phone interview, compensation is $120
Relapsing Remitting Multiple Sclerosis (RRMS) Patients ages 18-30 United States
30-minute online survey, compensation is $60
Relapsing Remitting Multiple Sclerosis (RRMS), Secondary Progressive Multiple Sclerosis (SPMS) patients United States
30-minute online survey, compensation is $120
Relapsing Remitting Multiple Sclerosis (RRMS) Spanish speaking patients United States
60-minute web-assisted phone interview, compensation is $150
Renal Cell Carcinoma (RCC) Patients United States
30-minute online-survey, compensation is $80
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Sepsis ExPEC patients United States
30-minute web-assisted phone interview plus possible in-person filming, compensation is $60 for the interview and hourly for the filming
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Spinal Muscular Atrophy Patients United States
30-minute online survey, compensation is $55
Systemic Mastocytosis patients United States
20-minute online survey, compensation is $40
Tourette Syndrome patients (ages 18-30) & caregivers (of patients ages 4-18) United States
60-minute web-assisted phone interview, compensation is $120
Vasculitis patients United States
90-minute web-assisted phone interview (WATI), compensation is $158
Wet Macular Degeneration Patients United States
60-minute web-assisted phone interview, compensation is $120
Wet Macular Degeneration patients United States
60-minute web-assisted phone interview (WATI), compensation is $105
United Kingdom
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United Kingdom
45-minute web-assisted phone interview, compensation is 100 GBP
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP ($90 USD)
Chronic Lymphocytic Leukemia (CLL) patients & caregivers ages 50+ United Kingdom
60-minute web-assisted phone interview, compensation is a 90 GBP gift card
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBP
Kidney Disease patients United Kingdom
10-minute online survey, compensation is 20 GBP
Primary Sjogren’s Syndrome patients United Kingdom
Two 60-minute web-assisted phone interviews (120-minute total) plus confirmation of diagnosis, compensation is 200 GBP for the interview and 40 GBP for confirmation of diagnosis
Secondary Immune Deficiency (SID) Patients United Kingdom
60-minute web-assisted phone interview + 15-minute prework, compensation is 75 GBP (interview) + 20 GBP (prework)
Wet Macular Degeneration patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 49 GBP
Canada
Hereditary Angioedema patients ages 12+ and caregivers Canada
90-minute virtual interview, compensation is $150 USD
Hidradenitis Suppurativa (HS) patients Canada
45-minute web-assisted phone interview, compensation is $90
France
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers France
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers France
45-minute web-assisted phone interview, compensation is 115 EUR
Hemophilia A patients France
30-minute web-assisted phone interview (WATI), compensation is 55 EUR
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 80 EUR
Wet Macular Degeneration patients France
60-minute web-assisted phone interview (WATI), compensation is 40 Euro
Germany
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 115 EUR
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Germany
5-hour web-assisted phone interview (WATI), compensation is 250 EUR
Hemophilia A patients Germany
30-minute web-assisted phone interview (WATI), compensation is 55 EUR
Kidney Disease patients Germany
10-minute online survey, compensation is 23 EUR
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Secondary Immune Deficiency (SID) Patients Germany
60-minute web-assisted phone interview + 15-minute prework, compensation is 80 EUR (interview) + 20 EUR (prework)
Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros
Wet Macular Degeneration patients Germany
60-minute web-assisted phone interview (WATI), compensation is 50 Euro
Italy
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Italy
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Italy
45-minute web-assisted phone interview, compensation is 115 EUR
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Italy
5-hour web-assisted phone interview (WATI), compensation is 480 EUR
Wet Macular Degeneration patients Italy
60-minute web-assisted phone interview (WATI), compensation is 54 EUR
Spain
Achondroplasia patients and caregivers Spain
60-minute web-assisted phone interview, compensation is 110 EUR
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Spain
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Spain
45-minute web-assisted phone interview, compensation is 115 EUR
Kidney Disease patients Spain
10-minute online survey, compensation is 23 EUR
Wet Macular Degeneration patients Spain
60-minute web-assisted phone interview (WATI), compensation is 37 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?
You will earn $120 per hour (typically) for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.
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.
