What's New at Rare Patient Voice?
Study Results
Have you ever thought about participating in a clinical trial? What would make you more likely to do so? In a study conducted by RPV last year, we asked 1,147 patients in the U.S. that question. As they told us, there are a number of factors that would make them more apt to participate, from receiving clear information about the trial and its goals to being compensated for time and travel expenses.
Your Time Is Valued, Even If You Didn’t Qualify
We always appreciate your time 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 drawing for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Maria L.!
Partner Corner
Breakthrough T1D is a foundation funding research to cure type 1 diabetes (T1D). Until there is that cure, we are working to improve people’s lives who live with T1D. The Community Engagement Manager offers free resources, educational events (both virtual and in-person), community support, research updates and invitations to events. Please visit our website to learn more or get started: https://www.breakthrought1d.org/northtexasoklahoma/
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
Acromegaly patients United States
90-minute web-assisted phone interview plus a 15-minute pre-read assignment, compensation is $180 for the interview and $30 for the pre-read assignment
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
African-American or Hispanic patients age 40+ in Philadelphia, PA or San Diego, CA United States
60-minute or 75-minute in-person interview, compensation is $150 for the 60-minute interview and $175 for the 75 minute interview
Allergy caregivers in Iselin, New Jersey United States
75-minute in-person focus group, compensation is $150
Alpha Thalassemia, Beta Thalassemia patients and caregivers United States
75-minute web-assisted phone interview, compensation is $150
Alpha Thalassemia, Beta Thalassemia patients and caregivers United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $50 for confirmation of diagnosis
Alzheimer's Disease (AD) caregivers of biological patients who have taken the pTau marker test United States
1 day in-person event in Indianapolis, IN, compensation is $125 per hour
Alzheimer's Disease (AD) caregivers (males who care for their spouse) United States
45-minute web-assisted phone interview, compensation is $45
Alzheimer’s Disease (AD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis: ATTR-CM patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Aortic Disease: Aortic Stenosis patients United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) patients and caregivers 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
Becker Muscular Dystrophy (BMD) patients and caregivers of patients ages 13 or older United States
60-minute web-assisted phone interview, compensation is $120
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
Bladder Cancer patients United States
20-minute online survey, compensation is $40
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Breast Cancer (BC), Colorectal Cancer, Kidney/Renal Cancer, Lung Cancer, Skin Cancer: Melanoma caregivers United States
20-minute online survey, compensation is $40
Breast Cancer (BC): Metastatic patients United States
60-minute web-assisted phone interview, compensation is $120
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-minute web-assisted phone interview, compensation is $60
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
Breast Cancer (BC) patients ages 18-65 diagnosed within the last few years United States
15 minute online survey, compensation is $40
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States
Cardiovascular Disease, High Blood Pressure (Hypertension, HBP), Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150
Chronic Idiopathic Urticaria (CIU), Chronic Spontaneous Urticaria (CSU) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities,c compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients 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 Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Classic Congenital Adrenal Hyperplasia (CAH) patients and caregivers United States, 30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients 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
Crohn's Disease (CD), Microscopic Colitis, Ulcerative Colitis (UC) patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $210
Crohn's Disease (CD), Ulcerative Colitis (UC) patients and caregivers in Chard, PA United States
90-minute in-person interview, compensation is $200 for patients and $225 for caregivers
Cushing's Syndrome (Hypercortisolism) patients and caregivers United States
30-minute online survey, compensation is $60
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Cutaneous Lupus Erythematosus (CLE) male patients United States
70-min Virtual Ethnography via Recollective + 60-min Follow Up Interview via Zoom, Compensation is $140 for the Virtual Ethnography and $120 for the follow-up interview
Cystic Fibrosis (CF) patients ages 18 and older and caregivers of patients ages 0-6 United States
25-minute survey, compensation is $50
Dementia caregivers United States
90-minute web-assisted phone interview plus a 60-minute follow-up web-assisted phone interview (confirmation of diagnosis required), compensation is $160 for the initial interview + $110 for the follow-up interview + $50 for confirmation of diagnosis
Diabetes (DM): Type 2, Obesity Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150
Dwarfism: Achondroplasia caregivers United States
30-minute online survey, compensation is $60
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Eosinophilic Esophagitis (EOE) patients United States
60-minute web-assisted phone interview, compensation is $120
Epilepsy: Dravet Syndrome (DS) caregivers United States
30-minute online survey, compensation is $60
Epilepsy: Focal Seizures (Partial Seizures) patients and caregivers of pediatric patients (ages 1-17) who have taken Briviact United States
30-minute online survey, compensation is $60
Epilepsy: Infantile Spasms (IS) caregivers of patients ages 0-5 United States
15-minute online survey plus a 45-minute phone interview (confirmation of diagnosis required), compensation is a total of $130
Essential Tremor, Parkinson's Disease (PD) patients United States
15-minute survey, compensation is $30
Glycogen Storage Disease Type Ia (GSDIa) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Heart Disease: Cardiomyopathy patients and caregivers United States
Heart Disease with High Cholesterol (Hyperlipidemia) Asian female patients United States
90-minute focus group, compensation is a $150 electronic Amazon gift card
Heart Disease patients United States
5-minute survey
Heart Disease: Pericarditis patients United States
30-minute online survey, compensation is $105
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
Hemochromatosis (Iron Overload) patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $230
Hemophilia A patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Hemophilia A patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $30 for the homework assignment
Hemophilia A patients (ages 18-34) and caregivers United States
30-minute online survey, compensation is $60
Hemophilia A patients (who previously used Altuviiio) and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Hemophilia B caregivers of patients born in 2007 or later United States
60-minute web-assisted phone interview, compensation is $120
Hepatitis: Hepatitis B (Hep B) patients United States
45-minute web-assisted phone interview, compensation is $90
Hepatitis: Hepatitis B (Hep B) patients who are immigrants from East Asia currently living in United States
20-minute online survey, compensation is $40
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
Hepatitis: Hepatitis C (Hep C) patients United States
20-minute online survey, compensation is $40
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
Hypoparathyroidism caregivers of patients ages 12-17 United States
60-75 minute web-assisted phone interview, compensation is $150
Hypophosphatasia (HPP) caregivers United States
Immune Thrombocytopenic Purpura (ITP) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients and caregivers United States
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
Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $30 for the homework assignment
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 ages 18-64 in California, Connecticut, Florida, Illinois, Indiana, New Jersey, New York, Texas, Wisconsin United States
60-minute web-assisted phone interview, compensation is $250
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: Acute Myeloid Leukemia (AML) patients and caregivers United States
45-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $125 for the interview and $50 for the homework assignment
Leukemia: Acute Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $150
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
Leukemia: Chronic Lymphocytic Leukemia (CLL), Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL), Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients United States
25-minute online survey, compensation is $50
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $100
Leukemia: Chronic Myeloid (Myelogenous) Leukemia (CML) male patients United States
30-minute online survey, compensation is $60
Liver Disease (not hepatitis): NASH/MASH male patients United States
30-minute web-assisted phone interview, compensation is $60
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) male patients United States
60-minute web-assisted phone interview, compensation is $120
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 United States
20-minute online survey, compensation is $40
Lung Cancer: Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview for patients and 90-minute web-assisted phone interview for caregivers, compensation is $153.60/patient and $233.70/caregiver
Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-minute online survey, compensation is $60
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
Macular Telangiectasia (MacTel) patients 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
Multiple Myeloma (MM) patients United States
20-minute online survey, compensation is $40
Multiple Myeloma (MM) African-American patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Multiple Myeloma (MM) patients and caregivers United States
30-minute online survey, compensation is $60
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
20-minute online survey, compensation is $40
Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS), Multiple Sclerosis (MS): Secondary Progressive MS (SPMS) caregivers United States
25-minute online survey, compensation is $50
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), Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) caregivers of pediatric patients United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients and caregivers in Denver, CO; Tampa, FL; Orlando, FL; Chicago, IL; Charlotte, NC; Raleigh, NC; Manhattan, NY; Cincinnati, OH; Columbus, OH United States
60-minute in-person interview, compensation is $180
Myelofibrosis patients United States
45-minute online survey, compensation is $90
Myelofibrosis (MF) patients United States
25-minute online survey, compensation is$50
Neuroendocrine Cancer (NET) patients and caregivers United States
40-minute web-assisted phone interview + 20-minute web-assisted phone interview, compensation is $80 for the 40-minute interview and $40 for the 20-minute interview
Neurofibromatosis Type 1 (NF1) patients and caregivers United States
30-minute online survey, compensation is $60
Niemann-Pick Disease patients who are Patient Advocacy Group Leaders United States
45-minute web-assisted phone interview, compensation is $180
Niemann-Pick Disease: Type C (NPC) patients United States
60-minute web-assisted phone interview, compensation is $120
Non-Clear Cell Renal Cell Carcinoma (Kidney Cancer, RCC) patients United States
60-minute web-assisted phone interview, compensation is $120
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
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL), Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
30-minute online survey, compensation is $60
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Noonan Syndrome (NS) caregivers of patients ages 3-14 and patients ages 8-14 (with caregiver's consent to participate) United States
90-minute web-assisted phone interview (caregivers) or 75-minute web-assisted phone interview (patient), compensation is $150
Osteoporosis Hispanic patients ages 55 and older United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Pancreatic Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Parkinson's Disease (PD) patients United States
15-minute online survey, compensation is $30
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
Willing to record a doctor visit via an app, compensation is $120
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
45-minute online survey, compensation is $90
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
45-minute online survey, compensation is $90
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150
Pediatric Low-Grade Glioma (pLGG) caregivers of recently diagnosed patients ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients United States
10-minute online survey, compensation is $25
Prostate Cancer patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Prostate Cancer patients ages 45+ United States
30-minute online survey, compensation is $60
Prostate Cancer patients ages 45+ United States
15-minute online survey, compensation is $30
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
Psoriasis (PsO), Psoriatic Arthritis (PsA) patients United States
60-minute web-assisted phone interview, compensation is $120
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) male patients taking 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
Pulmonary Arterial Hypertension (PAH) patients United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Fibrosis (PF): Idiopathic Pulmonary Fibrosis (IPF) or Progressive Pulmonary Fibrosis (PPF) patients United States
30-minute online survey, compensation is $60
Retinal Vein Occlusion, Vision Impairment: Diabetic Macular Edema (DME), Macular Degeneration: Wet Macular Degeneration patients United States
60-minute web-assisted phone interview, compensation is $120
Rheumatoid Arthritis (RA) patients United States
30-minute online survey, 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 online survey plus a 60-minute follow-up interview, compensation is $60 for the survey and $120 for the follow-up interview
Schizophrenia patients United States
30-minute online survey, compensation is $60
Scleroderma: Diffuse Systemic Scleroderma, Scleroderma: Limited, Scleroderma: Systemic Scleroderma patients United States
60-minute web-assisted phone interview, compensation is $125
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
Sinusitis: Rhinosinusitis patients United States
45-minute web-assisted phone interview, compensation is $60
Sjogren's Syndrome (SjS, SS) male patients United States
60-minute web-assisted phone interview, compensation is $120
Spinal Muscular Atrophy (SMA) patients United States
60-minute web-assisted phone interview plus 30-minute APP testing, compensation is up to $180
Stomach (Gastric) Cancer patients and caregivers United States
30-minute pre-work assignment plus a 60-minute web-assisted phone interview, compensation is $60 for the pre-work assignment and $120 for the interview
Thalassemia: Alpha-Thalassemia, Beta Thalassemia (Cooley’s Anemia) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Thyroid Eye Disease (TED) female patients United States
30-minute online survey, compensation is $60
Thyroid Eye Disease (TED) patients United States
30-minute online survey, compensation is $70
Transthyretin Amyloidosis (ATTR) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Ulcerative Colitis 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
Vasculitis patients United States
60-minute web-assisted phone interview, compensation is $120
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
Vision Impairment: Retinitis Pigmentosa patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
X-Linked Hypophosphatemia (XLH) patients United States
60-minute web-assisted phone interview, compensation is $120
X-Linked Hypophosphatemia (XLH) patients and caregivers United States
60-minute zoom interview, compensation is $110
X-Linked Retinoschisis (XLRS) adult patients and caregivers of children ages 1-17 United States
75-minute Zoom Interview (laptop/desktop with camera required), compensation is $150
Canada
Amyloidosis: ATTR-CM patients Canada
60-minute web-assisted phone interview, compensation is $160 CAD
United Kingdom
Amyloidosis: ATTR-CM patients United Kingdom
Asthma, Nasal Polyps patients United Kingdom
120-minute online bulletin board plus a 2-hour follow-up focus group
Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Epidermolysis Bullosa (EB): Recessive Dystrophic Epidermolysis Bullosa patient advocacy groups (PAG's) United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP
Esophageal Cancer, Gastroesophageal Junction Cancer, Stomach (Gastric) Cancer patients and caregivers United Kingdom
120-minute online bulletin board plus a 75-minute follow-up web-assisted phone interview for patients or a 90-minute web-assisted follow-up phone interview for patient/caregiver duo, compensation is 140 GBP for the online bulletin board, 88 GBP for the patient follow-up interview, and 105 GBP for the patient/caregiver follow-up interview **The market research study is commissioned by a pharmaceutical company**
Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Hereditary Angioedema (HAE) patients United Kingdom
1-2 minute survey
Hereditary Angioedema (HAE) patients United Kingdom
45-minute web-assisted phone interview or 30-minute online survey, compensation is 70 GBP for the interview and 50 GBP for the survey
Hypoparathyroidism caregivers of patients ages 12-17 United Kingdom60-75 minute web-assisted phone interview, compensation is $110 GBP
Myopathy, Thyroid Eye Disease (TED) patients United Kingdom
60-minute web-assisted phone interview, compensation is 120 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Prostate Cancer patients patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
France
Amyloidosis: ATTR-CM patients France
Asthma, Nasal Polyps patients France
120-minute online bulletin board plus a 2-hour follow-up focus group
Esophageal Cancer, Stomach (Gastric) Cancer patients and caregivers France
120-minute online bulletin board plus a 75-minute web-assisted follow-up phone interview for patients, compensation is 120 EUROS for the online bulletin board and 75 EUROS for the patient follow-up interview
Germany
Asthma, Nasal Polyps patients Germany
120-minute online bulletin board plus a 2-hour follow-up focus group
Myopathy, Thyroid Eye Disease (TED) patients Germany
60-minute web-assisted phone interview, compensation is 80 Euros
Italy
Asthma, Nasal Polyps patients Italy
120-minute online bulletin board plus a 2-hour follow-up focus group
Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Prostate Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
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.
