What's New at Rare Patient Voice?
Study Results
November is National Family Caregivers Month, an annual, nationwide observance in the United States honoring the millions of family members and friends who provide unpaid care and support to loved ones—whether they are aging, chronically ill, disabled, or managing mental health or rare disease.
Rare Patient Voice conducted a survey of 735 family caregivers of people living with one or more rare diseases in the United States. When asked what would make caregiving easier for them, the feedback we received included financial support, greater understanding in general, and the ability to take a break while being secure in the knowledge that their loved one was being properly cared for. Here are some of the answers to this question that we received.
Download and read the Rare Caregiver Report in its entirety for full survey results and key takeaways.
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, Tara!
Partner Corner
What would you do with an additional 13 hours each month? Family caregivers spend more than that on research for their loved one. It should be easier to find trustworthy resources and information. The Carefullist aims to reduce time spent on research so caregivers can take care of themselves or engage in an activity they enjoy with their loved one. That's why we've done the research for them and put it all in one place: www.carefullist.com.
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 patients ages 1-17 United States
3-hour in-person photo shoot, compensation is $500
Achondroplasia caregivers of pediatric patients United States
60-minute web-assisted phone interview via webcam, compensation is $120
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
Addiction patients United States
60-minute web-assisted phone interview, compensation is $100
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
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) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis: ATTR-CM patients United States
60-minute web-assisted phone interview + a 20-minute homework assignment, compensation is $190
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
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
Blood Cancer, Breast Cancer (BC), Colorectal (Colon) Cancer, Prostate Cancer patients diagnosed within the last year and caregivers of patients diagnosed within the last year United States
60-minute web-assisted phone interview, compensation is $120
Bone Marrow Transplant (BMT) (Stem Cell Transplant) Hispanic/Latino patients and caregivers United States
Brain Tumor/Cancer or Spinal Cancer patients ages 18-65 and caregivers of patients under age 17 or older than age 65 United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer early stage Non-Caucasian patients United States
20-minute online survey, compensation is $40
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 Immune Thrombocytopenia (ITP) 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 Kidney Disease (CKD) patients United States
30-minute survey, compensation is $60
Chronic obstructive pulmonary disease (COPD) and Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients United States
75-minute interview plus a 25-minute pre-work assignment, compensation is $112 for the interview and $30 for the pre-work assignment
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
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
Diabetes, Obesity caregivers of adolescent patients ages 10-17 United States
In-person interview, compensation is $250
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
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
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
Hemochromatosis (Iron Overload) patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $230
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
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
Hypoparathyroidism caregivers of patients ages 12-17 United States
60-75 minute web-assisted phone interview, compensation is $150
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
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: Focal Segmental Glomerulosclerosis (FSGS) patients United States
20-minute online survey, compensation is $40
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: Acute Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $150
Leukemia: Acute Myeloid Leukemia (AML) patients and caregivers in AL, AR, FL, GA, KY, LA, MS, NC, SC, TN, VA, and WV United States
60-minute web-assisted phone interview, compensation is $120
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) patients United States
60-minute web-assisted phone interview, compensation is $100
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
Lymphoma or Leptomeningeal Disease (LMD) 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
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 (FSHD) patients 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) male 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
Mycobacterium Avium Complex (MAC), Non-Cystic Fibrosis Bronchiectasis (NCFB), Nontuberculous Mycobacterial (NTM) patients United States
Myelodysplastic Syndrome (MDS) patients United States
60-minute web-assisted phone interview, compensation is $120
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 Type 1 (NF1) patients and caregivers United States
30-minute online survey, compensation is $60
Niemann-Pick Disease patients and caregivers United States
In-person interviews
Niemann-Pick Disease patients who are Patient Advocacy Group Leaders United States
45-minute web-assisted phone interview, compensation is $180
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) patients on CART Therapy and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Ovarian Cancer patients United States
25-minute survey, compensation is $50
Ovarian Cancer patients United States
60-minute web-assisted phone interview plus 30-minute online pre-task assignment, compensation is $120 for the interview and $80 for the pre-task assignment
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
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
50-minute survey, compensation is $100
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
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
20-minute survey, compensation is $40
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
Renal Cell Carcinoma (Kidney Cancer, RCC) patients United States
60-minute web-assisted phone interview, compensation is $120
Rheumatoid Arthritis, Diabetic Peripheral Neuropathy patients in the NYC Metro area United States, training session for a wearable activity/sleep tracker + 2 week data collection with tracker + 60-minute follow-up interview, compensation is $460
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 survey, compensation is $60
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Schizophrenia patients who use Cobenfy and caregivers of patients who use Cobenfy United States
20-minute survey, compensation is $40
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 and caregivers of pediatric patients under 18 United States
30-minute survey, compensation is $60
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
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
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
Hypoparathyroidism caregivers of patients ages 12-17 United Kingdom60-75 minute web-assisted phone interview, compensation is $110 GBP
Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) caregivers of male patients United Kingdom
60-minute web-assisted phone interview, compensation is 95 Pounds
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
Achondroplasia caregivers of pediatric patients Germany
60-minute web-assisted phone interview via webcam, compensation is $120 USD
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
Achondroplasia caregivers of pediatric patients Italy
60-minute web-assisted phone interview via webcam, compensation is $120 USD
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.
