What's New at Rare Patient Voice?
Study Results
Clinical trial co-design refers to when researchers work together with patients and others (like caregivers or doctors) to plan a study. Instead of designing the trial alone, they get input from people who are directly affected so the study is easier to take part in and focuses on what really matters to patients.
Rare Patient Voice surveyed 2156 U.S. patients for their thoughts on participating in co-design for clinical trials, including “What would encourage you to participate in co-design activities?” The top three answers to that question were:
- A clear explanation of the process
- Flexible scheduling
- Compensation for time
Read more in the presentation that is available in the Case Studies section of rarepatientvoice.com.
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, Kacey!
Partner Corner
CareCrowd was built around a simple idea: everyone deserves the feeling of having a doctor in the family. For rare disease patients navigating months between specialist appointments, that kind of continuous physician presence has never existed — until now. CareCrowd's physician advocates stay with you between visits, helping you make sense of what's happening, prepare for what's next, and never face the hard moments alone. RPV members have exclusive early access. Learn more: mycarecrowd.com/rpv
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
ANCA-Associated Vasculitis (AAV or Polyangiitis), Idiopathic Inflammatory Myopathy (IIM or Myositis), 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
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
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 (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 (excluding Breast Cancer) non-caucasian male patients United States
20-minute online survey, compensation is $40
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
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer 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 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
Cystic Fibrosis (CF) caregivers of children ages 5 and under United States
10-minute online survey, compensation is $25
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
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
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
Head & Neck Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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 patients United States
60-minute web-assisted phone interview, compensation is $120
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 (Hyperlipidemia) patients United States
60-minute web-assisted phone interview, compensation is $120
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: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
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: 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) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
15-minute online survey, compensation is $30
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
30-minute online survey, 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: 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: Cutaneous Lupus Erythematosus (CLE) patients United States
60-minute web-assisted phone interview, compensation is $120
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
M. Abscessus Infection (Mycobacterium Abscessus) patients United States
60-minute web-assisted phone interview, compensation is $145
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
Multifocal Motor Neuropathy (MMN) patients and caregivers United States
60-minute Zoom interview, compensation is $120
Multiple Myeloma (MM) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS) patients United States
15-minute online survey, compensation is $35
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) and Nontuberculous Mycobacterial (NTM) 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
Neuroendocrine Cancer (NET) (Carcinoid Cancer) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Neuropathy: Multifocal Motor Neuropathy (MMN) patients and caregivers United States
60-minute zoom interview, compensation is $120
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
Paraganglioma, Pheochromocytoma (PCC) Patient Advocacy Groups United States
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 United States
60-minute web-assisted phone interview, 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
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 diagnosed within the last year United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients who currently use the RemunityPRO Pump United States
30-minute web-assisted phone interview, compensation is $50
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
Urticaria (Hives): Chronic Spontaneous caregivers of children ages 18 and under United States
60-minute web-assisted phone interview, compensation is $120
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: Non-Segmental Vitiligo (NSV) patients United States
30-minute online survey, compensation is $60
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Von Willebrand Disease (VWD) patients United States
Clinical Trial
We have an opportunity to participate in a 20-minute online patient satisfaction survey, $25 reward
Canada
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 Triglycerides (Hypertriglyceridemia) patients United Kingdom
45-minute web-assisted phone interview, compensation is 40 GBP
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United Kingdom
30-minute online survey, compensation is 44.82 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
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients Australia
30-minute online survey, compensation is 60 AUD
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.
