What's New at Rare Patient Voice?
Seasons Greetings from RPV!
We truly value you, and are happy that you are part of the ever-growing Rare Patient Voice community! It’s our honor to help you share your opinions and insights with researchers throughout the year. From all of us at RPV, we wish you happy holidays and a terrific new year. Here is a special message from Wes Michael and a number of patients and family caregivers, reflecting on their experiences with RPV.
We Still Value Your Time, Even If You Don’t Qualify
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, Chiquita!
Partner Corner
ZERO Prostate Cancer is the leading national nonprofit with the mission to end prostate cancer and help all who are impacted. ZERO advances research, provides support, and creates solutions to achieve health equity to meet the most critical needs of our community. Learn more and find resources at zerocancer.org
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 Stacey Haines, Patient and Social Media Outreach Associate for Rare Patient Voice.
A graduate of the Institute of Integrative Nutrition, Stacey joined Rare Patient Voice as a member of the Patient Advocacy team in 2021. She is a caregiver to her young daughter, Iris, who lives with Crohn’s disease. This personal understanding has enabled Stacey to build long lasting relationships with patients and family caregivers.
“I’m proud to work at Rare Patient Voice for many reasons, but the most important is the impact we have on shaping the future. Being a caregiver and an advocate myself, I am passionate about connecting with other patients and caregivers and creating a sense of community. We are clearly making a difference and that makes my heart sing.”
Stacey and her family make their home in Hawaii, and exploring beaches, whale watching, seeing her son surf and her daughter dance are all favorite activities of hers.
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
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
Amyloidosis Patients and Caregivers United States
60-minute web-assisted phone interview, compensation is $120
Antisynthetase Syndrome, Dermatomyositis, Immune-Mediated Necrotizing Myopathy, Myasthenias patients United States
60-minute web-assisted phone interview, compensation is $120
Atrial Fibrillation (AFIB) patients United States
10-minute online survey, compensation is $25
Atrial Fibrillation (AFIB) patients diagnosed within the last 18 months United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $120 for the interview and $60 for confirmation of diagnosis
Avoidant Restrictive Food Intake Disorder (ARFID), Cancer, Cerebral Palsy, Cystic Fibrosis, Irritable Bowel Syndrome (IBS) caregivers (Ages 18 Months to 3 Years) United States
90-minute web-assisted phone interview plus a 30-minute diary, compensation is $180 for the interview and $60 for the diary
Bile Duct Cancer (Cholangiocarcinoma), Biliary Tract Cancer patients United States
30-minute online survey and voice response, compensation is a $60 amazon gift card
Bladder Cancer, Melanoma, Renal Cell Carcinoma, Stomach Cancer Patients & Caregivers United States
40-minute online survey, compensation is $80
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, Multiple Sclerosis (MS), Paroxysmal Nocturnal Hemoglobinuria (PNH), Psoriasis Patients United States
20-minute online survey, compensation is $40
Breast Cancer patients (ages 35-75) United States
20-minute online survey, compensation is $40
Breast Cancer patients United States
This is a 5-minute online survey for free access to a medical record collection service.
Cervical Cancer patients (diagnosed withing the last 5 years) United States
60-minute web-assisted phone interview (WATI) + 15-minute homework, compensation is $150
Chronic or Congestive Heart Failure patients (40-64 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Chronic Kidney Disease (CKD) Patients United States
30-minute online survey + confirmation of diagnosis required (COD), compensation is $110
Chronic obstructive pulmonary disease (COPD) Patients and Patients/Caregiver Duos - Los Angeles and surrounding area United States
80-minute in-person interview, compensation is $240
Chronic Spontaneous or Idiopathic Urticaria patients United States
60-minute online interview, compensation is $125 (interview) and $50 (POC-proof of confirmation)
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Clostridium Difficile (C Diff) male patients United States
10-minute online survey, compensation is $25
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
Cognitive Impairment African-American patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Congenital Adrenal Hyperplasia patients United States
30-minute web-assisted phone interview, compensation is $120
Coronary Artery Disease (CAD) patients ages 60-75 United States
60-minute web-assisted phone interview + 10-minute pre-work, Compensation is $120 + $25 for pre-work
Crohn's Disease (CD), Eczema, Juvenile Idiopathic Arthritis, Psoriatic Arthritis (PsA) or Ulcerative Colitis adolescent patients and caregivers (living in Philadelphia) United States
30-minute training & 75-minute interview or a 75-minute interview, compensation training is $100, interview is $225
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)
Diffuse Large B Cell Lymphoma (DLBCL) patients United States
Duchenne Muscular Dystrophy (DMD) Caregivers of Patients under age 5 United States
60-minute web-assisted phone interview, compensation is $120
Duchenne Muscular Dystrophy (DMD) Patients and Caregivers (Caregivers must be for Patients under age 30) United States
60-minute web-assisted phone interview, compensation is $120
Dupytren’s of the Foot, Fibromas, Ledderhose Disease, Plantar Fibromatosis patients United States
60-minute web-assisted phone interview, compensation is $120
End Stage Renal Disease (ESRD) patients & caregivers United States in the CA, OH, TX area
120-minute web-assisted phone interview, compensation is $90
Eosinophilic Esophagitis (EOE) Caregivers (Ages 1-17) & Patients (Ages 18-60) United States
60-minute web-assisted phone interview, compensation is $120
Epilepsy/Seizures male patients & caregivers of male patients (ages 12-17) United States
30-minute online survey, compensation is $60
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Gout Patients United States
60-minute web-assisted phone interview, compensation is $120
Growth Hormone Deficiency patients and caregivers (3-12 years) United States
45-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), compensation is $125
Heart Disease patients (Los Angeles, CA; New Orleans, LA) United States
In-person interview, compensation is $180/hr
Hemophilia A & B Patients & Caregivers United States
30-minute online survey, compensation is $60
Hemophilia B patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hemophilia patients and caregivers United States
60-minute in-person interview, compensation is $225
Hepatitis D patients United States
30-minute activities during a 2-3 week time period, compensation is $60
Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $180
Hidradenitis Suppurativa patients ages 18-54 United States
20-minute online survey, compensation is $60
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
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
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), OR Pulmonary Fibrosis (PF) patients (currently using or have used Tyvaso Nebulizer or Tyvaso DPI) United States
60-minute web-assisted zoom interview (WATI), 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
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
Metastatic Breast Cancer Patients United States
30-minute web-assisted phone interview, compensation is $60
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
Mitochondrial Myopathy Patients United States
60-minute web-assisted phone interview, compensation is $125
Mitochondrial Myopathy patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma patients and caregivers United States
30-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $60 for the interview and $30 for the homework assignment
Multiple Sclerosis (MS) Patients under 35 United States
60-minute web-assisted phone interview, compensation is $120
Multiple Sclerosis patients United States
25-minute online survey, compensation is $50
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
Myasthenia Gravis (MG) Patients Ages 50 and under diagnosed within the last 3 years United States
60-minute web-assisted phone interview, 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
Nontuberculous Mycobacterial (NTM) patients United States Eligible study participants will be paid up to $450 ($300 for participation in a 2-hour study interview [can be completed in two 1-hour sessions] and $150 for an additional 1-hour study interview).
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
Relapsing Remitting Multiple Sclerosis (RRMS) Patients ages 18-30 United States
30-minute online survey, compensation is $60
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
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Spinal Muscular Atrophy (SMA) Caregivers United States
45-minute online survey, compensation is $90
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 caregivers 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
Ulcerative Colitis patients United States
10-minute online survey, compensation is $25
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
Amyloidosis patients United Kingdom
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $198.65
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
Connective tissue disease-associated interstitial lung disease (CTD-ILD) patients United Kingdom
120-minute focus group, compensation is 120 GBP
Hepatitis D patients United Kingdom
30-minute activities during a 2-3 week time period, compensation is $60
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD
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)
Spinal Muscular Atrophy (SMA) Caregivers United Kingdom
45-minute online survey, compensation is 75 GBP
Wet Macular Degeneration patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 49 GBP
Canada
Amyloidosis patients Canada
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $275
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
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)
Spinal Muscular Atrophy (SMA) Caregivers Germany
45-minute online survey, compensation is 85 EUR
Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros
Wet Macular Degeneration patientsGermany
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
Spinal Muscular Atrophy (SMA) Caregivers Italy
45-minute online survey, compensation is 85 EUR
Wet Macular Degeneration patients Italy
60-minute web-assisted phone interview (WATI), compensation is 54 EUR
Spain
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
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.
