What's New at Rare Patient Voice?
Happy Holidays from RPV!
Thank you for being part of the Rare Patient Voice community! We truly value you and appreciate your taking part in research that can have an impact on patients and family caregivers, now and in the future. We hope you can take some time to relax and enjoy the holidays, like our zebra friend Rarity here!
Your Time Is Valued, Even If You Didn’t Qualify
We value your time, whether you qualify for a study or not. Each month we automatically enter people 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, Tracy M.!
Partner Corner
The Little Legs Big Heart Foundation is dedicated to empowering individuals living with skeletal dysplasia and their families to live life beyond height; through access to crucial medical care with renowned specialists, advocacy, support, outreach initiatives and educational projects. It doesn’t matter how long your legs are, we are here every step of the way, providing an inclusive community and foundation of care that resonates with each heart and soul of our skeletal dysplasia members and their families. Website: https://www.littlelegsbigheartfoundation.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
Achondroplasia caregivers of children ages 4-17 United States, 45-minute online survey, compensation is $100
Achondroplasia caregivers of patients ages 1-17 United States
3-hour in-person photo shoot, compensation is $500
Achondroplasia caregivers of children ages 1-17 United States
3 day online journal + 60-minute web-assisted interview, compensation is $360 for the online journal and $120 for the interview
Acute Coronary Syndrome (ACS), Atrial Fibrillation (AFIB) patients 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
Alzheimer’s Disease (AD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis patients and caregivers United States, 60-minute web-assisted phone interview + 30-minute homework assignment, compensation is $100 for the interview and $75 for the homework assignment
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
20-minute survey, compensation is $50
Ataxia: Ataxia Telangiectasia caregivers of children ages 6-11 United States
60-minute Zoom interview, compensation is $150
Atopic Dermatitis (Eczema) caregivers United States
10-minute online survey, compensation is $25
Atopic Dermatitis (Eczema) caregivers of children under 2 United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) patients and caregivers of patients ages 12+ 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 and caregivers United States
Patients: 60-minute web-assisted phone interview or 60-minute autoethnography; caregivers: 30-minute web-assisted phone interview; patient/caregiver duo: 30-minute web-assisted phone interview, compensation is $150 for the patient interview or autoethnography, $75 for the caregiver interview, $75/patient and $75/caregiver for the duo interview
Bipolar 1 or Schizophrenia patients who currently or have used an injectable treatment United States
60-minute web-assisted phone interview plus a 20-minute homework assignment, compensation is $150 for the interview and $50 for the homework assignment
Bladder Cancer: Muscle-Invasive Bladder Cancer (MIBC) patients United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $100 for the interview and $80 for confirmation of diagnosis (paid via egift card)
Bladder Cancer patients United States
Year long online community, compensation is gift cards upon completion of sections
Bone Marrow Transplant (BMT) (Stem Cell Transplant) Hispanic/Latino patients and caregivers United States
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) 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
Cancer patients United States
30-minute survey, compensation is $60
Cancer (excluding Breast Cancer) non-caucasian male patients United States
20-minute online survey, compensation is $40
Cancer patients who are male and have been diagnosed within the last 2 years in New Jersey or New York United States
60-minute web-assisted phone interview, compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
medical record service sign up, compensation is $75 for the initial signup
Chronic Kidney Disease (CKD) patients United States
30-minute survey, compensation is $60
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Obstructive Pulmonary Disease (COPD) patients United States
40-minute online survey, compensation is $80
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 Fibrinogen Deficiency patients United States
60-minute web-assisted phone interview, compensation is $120
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Depression male patients ages 21-65 available to travel (within the US) United States
60-minute web-assisted phone interview, compensation is $120
Eczema (Atopic Dermatitis) patients United States
60-minute web-assisted phone interview + 15-minute pre-work assignment, compensation is $120 for the interview and $30 for the pre-work assignment
Eczema (Atopic Dermatitis), Prurigo Nodularis (PN) adult patients ages 18+ United States
120-minute online bulletin board, compensation is $240
Endometrial Cancer, Liver Cancer, Renal Cell Carcinoma (Kidney Cancer, RCC), Thyroid Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Eosinophilic Esophagitis (EOE) patients United States
60-minute web-assisted phone interview, compensation is $120
Eosinophilic Esophagitis (EOE) patients United States
45-minute online diary plus a 75-minute web-assisted follow-up web-assisted phone interview, compensation is $100 for the online diary and $150 for the follow-up interview
Essential Thrombocythemia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
10-15 minute survey, compensation is $55
Gastrointestinal Stromal Tumor (GIST) patients United States
Online bulletin board of up to 8 hours, compensation is a total of $960
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
60-minute web-assisted phone interview, compensation is $100
Heart Disease: Cardiomyopathy patients United States
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: Non-Obstructive Hypertrophic Cardiomyopathy (nHCM) patients United States
60-minute web-assisted phone interview, compensation is $120
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
HER2 Positive Cancer patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Hereditary Angioedema (HAE) Type 1 & Type 2 patients Clinical Trial United States
Hidradenitis Suppurativa (HS) patients United States
60-minute web-assisted phone interview, compensation is $120
Human Growth Hormone Deficiency (GHD) adult patients ages 18+ and caregivers of children ages 1-18 United States
120-minute online bulletin board, compensation is $240
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</strong
5 minute online Survey
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF) caregivers of male patients currently using Tyvaso DPI United States
30-minute interview with the possibility of a 1 - 3.5 hour video creation opportunity, compensation is $50 for the initial interview and $100/hour for the video opportunity
Juvenile Arthritis (JA): Juvenile Idiopathic Arthritis (JIA), Juvenile Psoriatic Arthritis, Pediatric Psoriasis caregivers of children ages 2-18 United States
120-minute online bulletin board, compensation is $240
Kidney Disease: Complement-3 Glomerulopathy (C3G), Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
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) and Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patients United States
10-minute online survey, compensation is $25
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 United States
30-minute online survey, compensation is $90
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
Year long advisory board, compensation is $120/hour
Lupus: Systemic Lupus Erythematosus (SLE) male patients ages 45+ United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $150
Lymphoma or Leptomeningeal Disease (LMD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Lymphoma: Small Lymphocytic Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Macular Degeneration: Geographic Atrophy patients ages 50+ and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Menopause Hispanic patients United States
60-minute web-assisted phone interview, compensation is $120
Migraine patients United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma (MM) patients United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma (MM) Non-Caucasian patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Muscular Dystrophy (MD): Becker Muscular Dystrophy (BMD) patients ages 18+ and caregivers of patients ages 9-17 United States
60-minute web-assisted phone interview, compensation is $120
Muscular Dystrophy (MD): Facioscapulohumeral Muscular Dystrophy (FSH), Spinal Muscular Atrophy (SMA) patients and caregivers United States
60-minute in person interview, compensation is $180
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
Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) patients United States
45-minute online survey, compensation is $90
Myelodysplastic Syndrome (MDS) patients and caregivers United States
30-minute online survey, compensation is $60
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
Neuromyelitis optica (NMO) patients United States
40-minute online survey, compensation is $80
Niemann-Pick Disease patients and caregivers United States
In-person interviews
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): Diffuse Large B Cell Lymphoma (DLBCL), Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients and caregivers United States
15-minute survey, compensation is $30
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patients on CART Therapy and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Pancreatic Cancer (Metastatic) patients and caregivers 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
Prostate Cancer patients United States
10-minute online survey, compensation is $25
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations
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
Psoriatic Arthritis (PsA) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients who are taking Treprostinil United States
45-minute web-assisted phone interview, compensation is $90
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 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 United States
30-minute survey, compensation is $60
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Scleroderma, Systemic Sclerosis (SSc) patients United States
45-minute web-assisted phone interview, compensation is $100
Sickle Cell Disease (SCD) patients ages 18-30 United States
15-minute online survey, compensation is a $25 Amazon gift card
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
Spinal Muscular Atrophy (SMA) patients ages 18+ and caregivers of pediatric patients ages 2-18 United States
30-minute survey, compensation is $60
Spinal Muscular Atrophy (SMA) patients ages 18-25 and caregivers of patients ages 2-17 United States
40-minute online survey, compensation is $80
Tardive Dyskinesia (TD) patients United States
45-minute online survey, compensation is $90
Tardive Dyskinesia (TD) patients and caregivers United States
25-minute online survey, compensation is $50
Thyroid Eye Disease (TED) patients United States
30-minute online survey, compensation is $70
Ulcerative Colitis (UC) patients United States
30-minute online survey, compensation is $50
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
VEXAS Syndrome patients United States
Vision Impairment, Loss of Mobility patients who have a pet and are in Chicago IL United States
120-minute in-person interview, compensation is $275
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
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
Asthma, Nasal Polyps patients United Kingdom
120-minute online bulletin board plus a 2-hour follow-up focus group
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP
Diabetes caregivers United Kingdom
60-minute web-assisted phone interview, compensation is $150 USD
France
Asthma, Nasal Polyps patients France
120-minute online bulletin board plus a 2-hour follow-up focus group
Diabetes caregivers France
60-minute web-assisted phone interview, compensation is $150 USD
Germany
Addiction patients Germany
60-minute web-assisted phone interview, compensation is $100 USD
Asthma, Nasal Polyps patients Germany
120-minute online bulletin board plus a 2-hour follow-up focus group
Diabetes caregivers Germany
60-minute web-assisted phone interview, compensation is 130 EUR
Italy
Asthma, Nasal Polyps patients Italy
120-minute online bulletin board plus a 2-hour follow-up focus group
Spain
Asthma, Nasal Polyps patients Spain
120-minute online bulletin board plus a 2-hour follow-up focus group
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.
