What's New at Rare Patient Voice?
Survey Results
What would make taking part in a clinical trial appealing to you? In a recent RPV survey, 1147 patients in the United States were asked about communication preferences regarding clinical trials. The following were noted by patients as factors that might encourage study participation.
To download the report in its entirety, click 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, Margot!
Partner Corner
Our mission: To fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. Visit us at: ifopa.org.
Staff Spotlight
Based in Bosnia, Rheia Beganovic has been a Project Manager with Rare Patient Voice since November 2021. Prior to working for RPV, she worked on a passenger cruise ship for nine years, which helped Rheia to mold her strong client relation skills. She enjoys the positive spirit and camaraderie that is part of being part of Team RPV.
“From the moment I joined Rare Patient Voice, I’ve felt an immediate sense of belonging. Over time, I’ve not only felt but also witnessed how deeply RPV prioritizes teamwork. This supportive, collaborative atmosphere is, without a doubt, my favorite part of working at RPV.”
In her off hours, Rheia enjoys Asian food, taking walks, and traveling with friends and family.
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.
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 $120/each (patient/caregiver duo)
Alzheimer's Disease (AD), Cognitive Impairment (CI), Memory Loss, Multiple Sclerosis (MS), Parkinson's Disease (PD) patients Chicago Metro Area United States
120-minute in-person interview, compensation is $180
Aphasia, Dyslexia, Intellectual Disability, Learning Disability, Traumatic Brain Injury (TBI) patients Chicago Metro Area United States
120-minute in-person interview, compensation is $180
Autism patients Chicago Metro Area United States
120-minute in-person interview, compensation is $180
Breast Cancer caregivers United States
25-minute online survey, compensation is $50
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) patients United States
Cancer survivors ages 18-39 diagnosed at age 15 or older (excluding non-melanoma skin cancer) United States
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute zoom 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
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
Dravet Syndrome caregivers United States
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Erectile Dysfunction (ED) patients United States
45-minute web-assisted phone interview, compensation is $90
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
Focal Segmental Glomerulosclerosis (FSGS), Glomerulonephritis, IgA Nephropathy (Berger's Disease) patients United States
30-minute voice response survey, compensation is a $60 Amazon gift card
Gaucher Disease (GD), Hereditary Angioedema patients ages 18-79 and caregivers United States
20-minute online survey, compensation is $40
Gaucher Disease (GD): Type 3 patients and caregivers United States
60-minute web-assisted phone interview plus a 30-minute pre-work assignment, compensation is $120 for the interview and $30 for the pre-work assignment
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
HIV patients United States
30-minute web-assisted phone interview, compensation is $60
Hypophosphatasia patients United States
IgA Nephropathy (Berger’s Disease) patients diagnosed and/or changed medications since August 2024 United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients United States
30-minute web-assisted phone interview, compensation is $60
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
Liposarcoma 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
Myelofibrosis patients United States
Year long advisory boards (4 sessions), compensation is $150
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Obstructive Hypertrophic Cardiomyopathy (oHCM) patients and caregivers United States
Ovarian Cancer patients United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $115 for the interview and $57.50 for confirmation of diagnosis
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $250
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
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Primary Biliary Cholangitis (PBC) patients United States
60-minute web-assisted phone interview, compensation is $120
Primary Hyperoxaluria (PH) patients United States
60-minute web-assisted phone interview, compensation is $120
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
Pulmonary Arterial Hypertension (PAH) patients United States
30-minute web-assisted phone interview, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Severe Asthma patients United States
60-minute web-assisted phone interview, compensation is $120
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
Stroke patients and caregivers United States
60-minute in-person interview in the Boston, Chicago, NYC, and Philadelphia metro areas, compensation is $180
Tardive Dyskinesia patients United States
30-minute web-assisted phone interview plus 10-minute homework assignment, compensation is $80
Unresectable Hepatocellular Carcinoma (uHCC) patients United States
90-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
Warm Autoimmune Hemolytic Anemia (WAIHA) patients United States
30-minute voice response survey, compensation is a $60 Amazon gift card
Canada
Phenylketonuria (PKU) patients and caregivers Canada
60-minute web-assisted phone interview, compensation is $60 USD
United Kingdom
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
Ovarian Cancer patients United Kingdom
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is 65 GBP for the interview and 32.50 GBP for confirmation of diagnosis
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
Germany
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
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.
