What's New at Rare Patient Voice?
Survey Results
Clinical trials are a critical step in the development of new treatments and approaches to patient care. How patients learn about trials and what information they receive can affect patient opinions about clinical research and whether they choose to participate.
In 2024, RPV surveyed 1147 patients in the United States about communication preferences regarding clinical trials. Some highlights: most patients prefer to learn of clinical trial opportunities from their doctors. Clear and detailed information about a trial and its goals is a top point that might encourage a patient to take part in a trial. Finally, most patients find accessible information about specific trials related to their condition the most helpful.
The RPV report is available for download in its entirety here: https://rarepatientvoice.com/wp-content/uploads/2024/10/Patient-Preferences-Clinical-Trials.pdf
Your Time Is Valued, Even If You Didn’t Qualify
We appreciate your participation 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 raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Sarina P.!
Partner Corner
Cards2Warriors are on a mission to send 100,000 cards filled with messages of love + cheer to inspire hope and perseverance in patients and caregivers living with chronic illness or rare disease!
We believe that EVERYONE deserves to feel seen, loved and supported along their health odyssey! Therefore, we invite YOU to sign up for some of our unique snail mail support today! Visit us at: Cards2Warriors.org/happy-mail
Staff Spotlight
A graduate of the University of Central Florida, Tiffany White joined Rare Patient Voice in 2017 as a Patient Advocate. Currently as Director of Business Development, she works directly with clients to present RPV’s service offerings. Tiffany strives to provide superior customer service and to increase opportunities for all patients and caregivers who want to have their voices heard. Prior to working at Rare Patient Voice, Tiffany was a personal trainer and taught health and wellness at the high school level. Her passion for helping others, combined with her enthusiasm for health education, made Rare Patient Voice a perfect fit.
“I’ve always been passionate about helping people, and working at RPV has allowed me to make an impact on a larger scale. While my role focuses on supporting our clients, I find it so rewarding to know that our ultimate goal is helping to improve the lives of our patients. I also feel lucky to work alongside an amazing team that’s always willing to step outside their comfort zone to make a difference.”
When not working with clients or leading her team, Tiffany enjoys spending time with family, working out, and fishing.
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.
Acne patients (Excluding Maine, Massachusetts, Minnesota, Vermont, Washington DC, and West Virginia) United States
60-minute web-assisted phone interview, compensation is $120
Acute Kidney Injury (AKI) patients and caregivers United States
60-minute Zoom interview (patient only) and 90-minute Zoom interview (patient/caregiver duo), compensation is $150 (patient only) and $200/each (patient/caregiver duo)
Acute Lymphoblastic Leukemia (ALL) Caregivers of adolescents ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120
Adenine Phosphoribosyltransferase (APRT) Deficiency, Autosomal Dominant Polycystic Kidney Disease (ADPKD), Cystinuria, Dent Disease, G6PD Deficiency (Glucose-6-Phosphate-Dehydrogenase Deficiency), Hemophilia, Primary Hyperoxaluria, Sickle Cell Disease (SCD), Thalassemia Middle-Eastern or North-African patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis patients and caregivers United States
40-minute online survey, compensation is $100
Atherosclerotic Cardiovascular Disease (ASCVD), Ischemic Stroke, Myocardial Infarction (MI)/Heart Attack, Peripheral Artery Disease (PAD) patients in the New York Metro area United States
60-minute in-person interview, compensation is $180
Breast Cancer caregivers United States
25-minute online survey, compensation is $50
Breast Cancer patients (stage IV metastatic) United States
25-minute online survey, compensation is $50
Breast Cancer patients and caregivers United States
10-minute in-person survey (to include doctor), compensation is $150
Cancer (Solid Tumor), Mycosis Fungoides (MF) patients United States
60-minute web-assisted phone interview, compensation is $120
Carriers of X-Linked Chronic Granulomatous Disease (X-CGD) United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $50 for the homework
Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Pain patients in Georgia, North Carolina, South Carolina, and Tennessee United States
25-minute online survey, compensation is $50
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) patients diagnosed within the last 12 months United States
20-minute online survey, compensation is $40
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma, Non-Hodgkin's Lymphoma caregivers United States
20-minute online survey, compensation is $40
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Dravet Syndrome caregivers United States
Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy pediatric caregivers United States
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Epilepsy: Cluster Seizures patients or patients prescribed a seizure rescue treatment United States
20-minute online survey, compensation is $40
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
Gaucher Disease (GD), Hereditary Angioedema patients ages 18-79 and caregivers United States
20-minute online survey, compensation is $40
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
120-minute in-person interview in New York City, compensation is $360
Head & Neck Cancer patients United States
60-minute focus group, compensation is $120
Hemophilia A patients United States
30-minute web-assisted phone interview, compensation is $60
Hemophilia A & B patients and caregivers United States
30-minute online survey, compensation is $60
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
HIV patients United States
30-minute web-assisted phone interview, compensation is $60
Hypochondroplasia caregivers United States
75-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is $250
IgA Nephropathy (Berger’s Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Immune Thrombocytopenic Purpura (ITP) patients United States
10-minute online survey, compensation is $25
Immune Thrombocytopenic Purpura (ITP) patients United States
5-10 minute in-person recording of doctor visit, compensation is $150
Interstitial Lung Disease, Systemic Scleroderma patients United States
90-minute web-assisted phone interview, compensation is $250
Liver Disease (not hepatitis): NASH/MASH, Fatty Liver Disease (NAFLD) non-caucasian patients United States
60-minute web-assisted phone interview, compensation is $120
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
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) male patients United States
60-minute web-assisted phone interview, compensation is $90
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150
Phenylketonuria (PKU) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $60
Primary Biliary Cholangitis (PBC) patients United States
30-minute web-assisted phone interview, compensation is $60
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview, compensation is $120
Progressive Multifocal Leukoencephalopathy patients and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients and caregivers United States
20-minute online survey, compensation is $40
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
Stiff Person Syndrome (SPS) patients United States
60-minute web-assisted phone interview, compensation is $120
Thyroid Eye Disease (TED) male patients United States
75-minute web-assisted phone interview, compensation is $150
Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis
Von Willebrand Disease Type 1 female patients United States
10-minute online survey, compensation is $25
Wet AMD (nAMD) patients diagnosed within the last 12 months United States
60-minute web-assisted phone interview, compensation is $120
Canada
Phenylketonuria (PKU) patients and caregivers Canada
60-minute web-assisted phone interview, compensation is $60 USD
Primary Biliary Cholangitis (PBC) patients Canada
30-minute web-assisted phone interview
United Kingdom
Colorectal (Colon) Cancer patients United Kingdom
75-minute web-assisted phone interview, compensation is 113 GBP
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Glaucoma patients ages 40+ United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Primary Biliary Cholangitis (PBC) patients United Kingdom
30-minute web-assisted phone interview
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
France
Primary Biliary Cholangitis (PBC) patients France
30-minute web-assisted phone interview
Germany
Primary Biliary Cholangitis (PBC) patients Germany
30-minute web-assisted phone interview
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
Brain Tumor, Breast Cancer (BC), Colorectal (Colon) Cancer, Lung Cancer, Pancreatic Cancer, Prostate Cancer, Renal Cell Carcinoma (Kidney Cancer, RCC), Skin Cancer, Stomach (Gastric) Cancer, Testicular Cancer patients Italy
15-minute online survey, compensation is $30 USD
Primary Biliary Cholangitis (PBC) patients Italy
30-minute web-assisted phone interview
Spain
Brain Tumor, Breast Cancer (BC), Colorectal (Colon) Cancer, Lung Cancer, Pancreatic Cancer, Prostate Cancer, Renal Cell Carcinoma (Kidney Cancer, RCC), Skin Cancer, Stomach (Gastric) Cancer, Testicular Cancer patients Spain
15-minute online survey, compensation is $30 USD
Primary Biliary Cholangitis (PBC) patients Spain
30-minute web-assisted phone interview
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
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.
