What's New at Rare Patient Voice?
Study Results
Earlier this year, Rare Patient Voice surveyed members of our UK patient panel to collect their overall attitudes toward the use of AI in healthcare, including personal comfort using AI tools, perceived impact on quality of care, and opinions on clinicians using AI for diagnosis, treatment, and monitoring. Feedback was received from 302 respondents. The following represent key findings from the survey.
Your Time Is Valued, Even If You Didn’t Qualify
Your time is valued, whether you qualify for a study or not. Each month we automatically enter those who tried but did not qualify for a study into a drawing for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Laura E.!
Partner Corner
Ataxia Connection’s nonprofit mission is to help those affected by Ataxia through direct assistance, community and professional education and awareness, support for care partners, and funding for medical therapies, equipment and research. Our organization’s programs and partnerships focus on improving the quality of life for ataxians in our service area of Nebraska and Iowa. Visit us at https://ataxiaconnection.org
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: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States
Participate in a 5-minute survey for a medical history platform and up to $90 per year for caregivers who complete brief surveys about their child's health
Acute Pain patients who speak Mandarin United States
60-minute web-assisted phone interview, compensation is $120
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Alopecia: Alopecia Areata (AA) male patients United States
60-minute web-assisted phone interview, compensation is $120
Alzheimer's Disease (AD), Cognitive Impairment (CI) patients and caregivers United States
50-minute online bulletin board with optional 60-minute follow up interview, compensation is $100 for the online bulletin board and $120 for the interview
ANCA-Associated Vasculitis (AAV or Polyangiitis), Idiopathic Inflammatory Myopathy (IIM or Myositis), Rheumatoid Arthritis (RA), Systemic Sclerosis (SSc or Scleroderma) patients ages 18-70 who have received autoimmune treatments United States - Clinical Trial
Asthma patients United States
60-minute web-assisted phone interview, compensation is $120
Asthma: Severe Eosinophilic Asthma patients in Warwick, RI (and 60 mile radius) United States
Clinical Trial
Atopic Dermatitis (Eczema) caregivers of children under 2 United States
60-minute web-assisted phone interview, compensation is $120
Atrial Fibrillation (AFIB) non-causcasian patients United States
60-minute web-assisted phone interview, compensation is $120
Autoimmune Encephalitis (AE) patients United States
60-minute web-assisted phone interview + 30-minute pre-work task, compensation is $225
Bladder Cancer: Muscle-Invasive Bladder Cancer (MIBC), BTC (Gastro Cancer), Liver Cancer: Hepatocellular Carcinoma (HCC) patients United States
15-minute online survey, compensation is $30
Breast Cancer (BC) female patients United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $119 for the interview and $60 for confirmation of diagnosis
Breast Cancer (BC): Metastatic patients (Stage IV) United States
25-minute survey, compensation is $50
Breast Cancer patients United States
5-minute online survey, compensation is access to a medical record collection service
Breast Cancer patients (Stage IV, Metastatic) United States
Breast Cancer (BC): Triple-Negative Breast Cancer (TNBC) patients United States
Passive metering app (span of 7-28 days), compensation is up to $500 based on days of interaction
Cancer patients ages 22-39 United States
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
30-minute online survey, compensation is $50
Chronic obstructive pulmonary disease (COPD): Stage 3/Stage 4 patients in the Louisville/Denver, CO area United States
3 1/2 hour in-person usability study, compensation is $300
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Colorectal (Colon) Cancer patients United States
25-minute online survey, compensation is $50
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
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 Hearing Loss patients ages 18-22 and caregivers (age 18+) of patients under age 22 United States
60-minute web-assisted phone interview, compensation is $120
Crohn's Disease (CD), Eczema (Atopic Dermatitis), Ulcerative Colitis (UC) patients ages 18+ and caregivers of adolescent patients ages 12-17 in Dallas, TX and surrounding areas (up to 3 hours drive time) or New York, NY United States
60-minute in-person interview, compensation is $150
Crohn’s Disease (CD), Irritable Bowel Disease (IBD), Ulcerative Colitis (UC) patient advocacy groups United States
45-minute web-assisted phone interview, compensation is $180
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Diabetes (DM): Type 1 caregivers of children United States
20-minute online survey, compensation is $50
Diabetes (DM): Type 2 patients United States
20-minute online survey, compensation is $50
Eczema: Chronic Hand Eczema caregivers and their adolescent patients ages 12-17 United States
1-2 hour interviews, compensation is $120 per hour
Endometrial Cancer, Ovarian Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer patients United States
45-minute web-assisted phone interview, compensation is $150
Epilepsy: Angelman Syndrome caregivers of children United States
30-minute web-assisted phone interview, compensation is $60
Epilepsy caregivers (of adolescents ages 12-17) and their patients United States
60-minute web-assisted phone interviews via online teleconference (up to 2 interviews), compensation up to $300
Esophageal Cancer patients United States
30-minute online interview, compensation is $60
Fabry Disease patients United States
30-minute online interview, compensation is $60
Female patients ages 18-50 who have had cosmetic breast augmentation surgery United States
60-minute web-assisted phone interview, compensation is $120
Friedrich’s Ataxia (FA) patients and caregivers of patients ages 16+ United States
30-minute online survey, compensation is $60
Generalized Lipodystrophy (GLD) adult and adolescent patients United States
In-person interview, compensation is $250
Giant Cell Arteritis (GCA) patients United States
60-minute web-assisted phone interview, compensation is $120
Glycogen Storage Disease (GSD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Graft Versus Host Disease (GVHD) patients and caregivers United States
60-minute web-assisted phone interview + homework assignment, compensation is $150 for the interview and $25 for the homework assignment
Hearing Loss: Deaf patients United States
10-minute online survey, compensation is $30
Hearing Loss: Deaf patients United States
90-minute in-depth interview, compensation is $180
Heart Disease: Cardiomyopathy patients United States
Clinical Trial
Heart Disease: Heart Attack (MI), Stroke patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
30-minute web-assisted phone interview, compensation is $60
Heart Disease: Pericarditis patients United States
75-minute web-assisted phone interview, compensation is $175
Hemophilia A patients and caregivers United States
2-day in-person event in New Jersey, compensation is $150 per hour
Hepatitis: Hepatitis C (Hep C) male or Non-Caucasian female patients United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour
Hidradenitis Suppurativa (HS) patients United States
60-minute web-assisted phone interview, compensation is $120
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients United States
Clinical Trial
High Cholesterol (Hyperlipidemia) patients United States
60-minute web-assisted phone interview, compensation is $120
High Triglycerides patients United States
60-minute web-assisted phone interview or 75-minute web-assisted phone interview, compensation is $120 for the 60-minute interview and $150 for the 75-minute interview
Hot Flashes and Vasomotor Symptoms (VMS) Hispanic Female patients United States
60-minute web-assisted phone interview, compensation is $120
Hypersomnia: Idiopathic Hypersomnia (IS) male patients United States
120-minute web-assisted phone interview, compensation is $120
Hypertrophic Obstructive Cardiomyopathy (oHCM) patients ages 20-29 and caregivers of patients ages 10-25 United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients United States
5 minute online Survey
IgG 4 Related Disease (IgG4-RD) patients and caregivers United States
60-minute web-assisted phone interview + 15-minute pre-work task, compensation is $120
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients United States
Kidney Disease: Chronic Kidney Disease (CKD) patients currently taking XPHOZAH United States
30-minute web-assisted phone interview, compensation is $60
Kidney Disease: IgA Nephropathy (Berger's Disease) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: IgA Nephropathy (Berger's Disease) patients and caregivers United States
3-minute prescreener
Kidney Disease, Kidney Disease: End Stage Renal Disease (ESRD, Kidney Failure) patients and caregivers United States
20-minute survey, compensation is $40
Kidney Disease patients United States
15-minute online survey, compensation is $30
Kidney Disease: Polycystic Kidney Disease (PKD) patients United States
60-minute web-assisted phone interview plus a 45-minute week-long diary, compensation is $120 for the interview and $90 for the follow up diary
Leukemia: Chronic Lymphocytic Leukemia (CLL) caregivers United States
15-minute online survey, compensation is $30
Leukemia: Chronic Myeloid (Myelogenous) Leukemia (CML) patients United States
30-minute online survey, compensation is $60
Liver Disease (not hepatitis): NASH/MASH patients ages 18+ in Dallas, TX and surrounding areas (up to 3 hours drive time), or New York, NY United States
60-minute in-person interview, compensation is $150
Lung Cancer: Non -Small Cell Lung Cancer (NSCLC) patients United States
25-minute online survey, compensation is $50
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
30-minute web-assisted phone interview, compensation is $60
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
Year long advisory board, compensation is $120/hour
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
60-minute interview + 10-minute homework assignment, compensation is $150 for the interview and $50 for the completed homework assignment
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients (Stage IV, Metastatic) United States
Lung Cancer: Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview + 60-minute homework assignment, compensation is $175 for the interview and $175 for the homework assignment
Lupus: Lupus Nephritis (LN), Primary Membranous Nephropathy (pMN) patients ages 18-70 who have previously received 2 types of therapy for Kidney issues United States
Clinical Trial
Macular Degeneration patients United States
60-minute web-assisted phone interview, compensation is $100
Mastocytosis patients United States
30-minute web-assisted phone interview, compensation is $60
Melanoma patients and caregivers United States
30-minute online interview, compensation is $60
Menopause female patients ages 55-80 United States
Mucopolysaccharidoses (MPS): MPS IV A (Morquio A Syndrome) patients United States
60-minute web-assisted phone interview, compensation is $120
Mucopolysaccharidoses (MPS) patients United States
60-minute web-assisted phone interview, compensation is $120
Multifocal Motor Neuropathy(MMN) patients United States
30-minute Zoom interview, compensation is $60
Multiple Myeloma (MM) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) patients and caregivers of ages 6+ United States
75-minute web-assisted phone interview, compensation is $150
Myasthenia Gravis (MG) patients United States
60-minute web-assisted phone interview, compensation is $120
Mycobacterium Avium Complex (MAC), Non-Cystic Fibrosis Bronchiectasis (NCFB), Nontuberculous Mycobacterial (NTM) patients United States
Myelodysplastic Syndrome (MDS) patients and caregivers United States
90-minute web-assisted phone interview (patient) and 60-minute web-assisted phone interview (caregiver) + confirmation of diagnosis, compensation is $175 (patient/90-minute interview) and $125 (caregiver/60-minute interview) and $75 for confirmation of diagnosis
Neurofibromatosis (NF): NF1 patients and caregivers United States
25-minute online survey, compensation is $50
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients taking/prescribed Brinsupri United States
Online surveys (6-month span), compensation provided for each survey completed
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $125
Organ Transplant: Kidney patients United States
75-minute web-assisted phone interview, compensation is $150
Osteoarthritis (knee) patients United States
60-minute web-assisted phone interview, compensation is $120
Pancreatic Cancer caregivers United States
60-minute web-assisted phone interview, compensation is $100
Parkinson's Disease (PD) patients (early stage) and caregivers (early stage patients) United States
60-minute web-assisted phone interview, compensation is $120
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
Willing to record a doctor visit via an app, compensation is $120
Phenylketonuria (PKU) patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Philadelphia Chromosome–Positive Chronic Myeloid Leukemia (Ph+ CML) patients United States
60-minute web-assisted phone interview, compensation is $120
Postural Orthostatic Tachycardia Syndrome (POTS) patients and caregivers United States
60-minute web-assisted phone interview + 40-minute survey, compensation is $200
Pre-Exposure Prophylaxis (PrEP) patients United States
45-minute web-assisted phone interview, compensation is $90
Prostate Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $175
Psoriasis (PSO), Psoriatic Arthritis (PsA) African American, Asian, Hispanic patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Pulmonary Arterial Hypertension (PAH) patients and caregivers in New York City United States
60-minute in-person interview, compensation is $200
Pulmonary Arterial Hypertension (PAH) patients who currently use the RemunityPRO Pump United States
30-minute web-assisted phone interview, compensation is $50
Renal Cell Carcinoma (Kidney Cancer, RCC) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Rheumatoid Arthritis (RA) patients ages 18+ in Dallas, TX and surrounding areas (up to 3 hours drive time) or New York, NY United States
60-minute in-person interview, compensation is $150
Rheumatoid Arthritis (RA) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Schizophrenia patients who use Cobenfy United States
Year long study with focus groups
Scleroderma: Systemic Scleroderma patients United States
60-minute online bulletin board plus a 60-minute web-assisted follow up phone interview, compensation is $120 for the online bulletin board and $120 for the follow up interview
Sinusitis: Rhinosinusitis patients United States
60-minute web-assisted phone interview, compensation is $120
Sjogren's Syndrome (SjS, SS) patients ages 40-60, males any race/ethnicity and non-caucasian females United States
60-minute web-assisted phone interview, compensation is $120
Tenosynovial Giant Cell Tumor (TGCT) patients United States
30-minute web-assisted phone interview, compensation is $60
Tumors Associated With Hypoglycemia (Hyperinsulinism) patients and caregivers United States
Clinical Trial
Ulcerative Colitis (UC) patients United States
30-minute online survey, compensation is $50
Ulcerative Colitis (UC) patients United States
60-minute web-assisted phone interview, compensation is $120
Ulcerative Colitis (UC) patients in Ogden UT, New Iberia LA, Yonkers NY (60-mile radius) United States
Clinical Trial
Urticaria (Hives): Chronic Spontaneous patients ages 18 and over and caregivers of patients ages 12 and older United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Von Willebrand Disease (VWD) patients United States
Clinical Trial
Wilson's Disease (Hepatolenticular Degeneration) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Canada
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients Canada
Clinical Trial
Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers Canada
60-minute web-assisted phone interview + a 30-minute homework assignment, compensation is $180
United Kingdom
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients United Kingdom
Clinical Trial
High Triglycerides (Hypertriglyceridemia) patients United Kingdom
45-minute web-assisted phone interview, compensation is 40 GBP
France
Diabetes (DM): Type 1 caregivers of children France
20-minute online survey, compensation is $50 USD
Diabetes (DM): Type 2 patients France
20-minute online survey, compensation is $50 USD
Germany
Breast Cancer (BC) female patients Germany
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 80 Euros for the interview and 40 Euros for confirmation of diagnosis
Diabetes (DM): Type 1 caregivers of children Germany
20-minute online survey, compensation is $50 USD
Diabetes (DM): Type 2 patients Germany
20-minute online survey, compensation is $50 USD
High Triglycerides (Hypertriglyceridemia) patients Germany
45-minute web-assisted phone interview, compensation is 55 Euros
Italy
High Triglycerides (Hypertriglyceridemia) patients Italy
45-minute web-assisted phone interview, compensation is 55 Euros
Australia
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients Australia
Clinical Trial
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 (typically) per hour 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 $18 million dollars since 2013 for participating in research studies.
