What's New at Rare Patient Voice?
Study Results
Earlier this year, Rare Patient Voice conducted a survey of 1,147 patients in the US to better understand their preferences for communication about clinical trials. The following are seven key findings that emerged from the survey results:
- Clarity and conciseness: Patients want clinical trial information to be clear, concise, and easy to understand.
- Transparency: Patients value transparency from researchers about the goals, risks, potential benefits, and any costs or compensation associated with a clinical trial.
- Frequent updates: Patients appreciate regular communication and status updates throughout the entire clinical trial process.
- Personalized outreach: Many patients want to learn about relevant clinical trial opportunities directly from their healthcare providers, rather than having to search for them independently.
- Accessible information: Patients want clinical trial details to be made available through multiple channels, such as email, mail, doctors' offices, and patient support groups, so they may reach a wider audience.
- Empathetic communication: Researchers should recognize the emotional and logistical challenges patients face and tailor their communication approach to be sensitive to patients' needs and situations.
- Dedicated point of contact: Patients value having a designated individual they can easily reach out to with questions or concerns during the course of a clinical trial.
Didn’t Qualify for a Study? We Still Value Your Time
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, Teresa!
Partner Corner
Visit us at: hpvca.org
Instagram: https://www.instagram.com/hpvcancersalliance
Staff Spotlight
A marketing and communications professional with a background spanning the rare disease, nonprofit, and book publishing spaces, Laura Mullen joined Rare Patient Voice in 2021 and currently serves as Director of Marketing and Communications. She earned a BA in English Literature from Queens College of the City University of New York, and worked part-time during college at a NYC market research firm. At RPV, her focus is on promoting the company through a variety of communications vehicles including social media, newsletters, awards, press releases, webinars, videos, and media interviews.
“Patients and their loved ones are frontline experts on the diseases affecting their lives. Their opinions need to be heard by companies developing new products and services. I’m proud of working for a company that makes that connection a reality and always puts patients and family caregivers first.”
In her off hours, Laura loves reading, cooking, music, pop culture, and playing Rummy 500. Turning off her copy editing brain remains a work in progress.
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.
Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 10-17) in the United States
Join a 120-minute in-person interview. Compensation is $565 to $835.
Acquired Hypothalamic Obesity caregivers of patients under 18 United States
60-minute web-assisted phone interview plus a pre-work assignment, compensation is $150
Acute Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alcohol-Related Liver Disease (ARLD), Cirrhosis patients /strong> United States
60-minute web-assisted phone interview, compensation is $130
Amyotrophic Lateral Sclerosis (ALS), Aphasia, Stroke patients and caregivers in San Diego, CA; San Francisco, CA; Phoenix, AZ United States
60-minute in-person interview, compensation is $150/patient and $150/caregiver
Beta Thalassemia (Cooley’s Anemia), Cancer, Eczema (Atopic Dermatitis), Eosinophilic Esophagitis (EOE), Hodgkin's Lymphoma, Inflammatory Bowel Disease (IBD), Rheumatoid Arthritis (RA) caregivers of pediatric patients in Boston, Chicago, Dallas United States
60-minute in-person interview, compensation is $300
Beta Thalassemia (Cooley’s Anemia), Cerebral Adrenoleukodystrophy (CALD), Duchenne Muscular Dystrophy (DMD), Hemophilia A, Hemophilia B, Retinal Dystrophy, Sickle Cell Disease (SCD), Spinal Muscular Atrophy (SMA), Transfusion-Dependent patients United States
60-minute zoom interview, compensation is $120
Beta Thalassemia (Cooley’s Anemia), Sickle Cell Disease caregivers United States
45-minute online survey, compensation is $110
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
Carcinoma, Liver Cancer patients and caregivers United States
30-minute web-assisted phone interview plus a 15-minute online survey, compensation is $60 for the interview and $30 for the survey
Cardiac Surgery, Sepsis patients and caregivers United States
60-minute web-assisted phone interview for patients or 90-minute web-assisted phone interview for patients and caregivers together, compensation is $120 for the patient only interview and $180 for the patient and caregiver interview
Chronic Myeloid (Myelogenous) Leukemia (CML) male patients and caregivers of male patients United States
30-minute online survey, compensation is $60
Chronic Spontaneous Urticaria male 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
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Dwarfism caregivers United States
30-minute online survey, compensation is $60
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Endometrial Cancer patients currently in treatment United States
30-minute web-assisted phone interview, compensation is $90
Esophageal Cancer, Gastric Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Exocrine Pancreatic Insufficiency patients United States
10-minute online survey, compensation is $30
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
120-minute in-person interview in New York City, compensation is $360
Grave's Disease, Thyroid Eye Disease (TED) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Head & Neck Cancer patients United States
60-minute focus group, compensation is $120
Hemophilia A patients United States
20-minute online survey, compensation is $40
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
Huntington's Disease (HD) patients and caregivers United States
30-minute online survey, compensation is $60
Hypertrophic Obstructive Cardiomyopathy (HOCM) patients United States
2-week passive metering app, compensation is $300
IgA Nephropathy (Berger's Disease) patients United States
30-minute online survey, compensation is $100
IgA nephropathy (Berger's Disease) patients United States
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Multiple Myeloma (MM) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
25-minute online survey, compensation is $50
Myasthenia Gravis (MG) patients diagnosed within the last 2 years United States
60-minute web-assisted phone interview, compensation is $120
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, 10-minute homework, 4-hour mobile ethnography, compensation is $125 for the interview, $25 for the homework, and $300 for the mobile ethnography
Parkinson's Disease (PD) patients ages 40-50 and caregivers of patients ages 40-50 United States
60-minute web-assisted phone interview, compensation is $120
Parkinson’s Disease patients in Philadelphia, PA United States
60-minute in-person interview, compensation is $300
Primary Biliary Cholangitis (PBC) patients United States
30-minute web-assisted phone interview, compensation is $60
Primary Biliary Cholangitis (PBC) patients United States
20-minute online survey, compensation is $40
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Schizophrenia patients ages 18-50 and caregivers United States
60-minute online bulletin board for caregivers and 45-minute follow-up interview for patients, compensation is $120 for the online bulletin board and $90 for the interview
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $62.50
Spinal Muscular Atrophy (SMA) caregivers of children ages 1-5 United States
60-minute web-assisted phone interview, compensation is $120
Spinal Muscular Atrophy (SMA) caregivers of patients who use Zolgesma United States
30-minute web-assisted phone interview, compensation is $60
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
Ulcerative Colitis (UC) patients United States
20-minute online survey, compensation is $25
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
X-Linked Hypophosphatemia patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
United Kingdom
Colorectal (Colon) Cancer patients United Kingdom
75-minute web-assisted phone interview, compensation is 113 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
Canada
Beta Thalassemia (Cooley’s Anemia), Sickle Cell Disease caregivers Canada
45-minute online survey, compensation is $108
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Canada
60-minute online bulletin board, compensation is 120 CAD
Primary Biliary Cholangitis (PBC) patients Canada
30-minute web-assisted phone interview
Sickle Cell Disease (SCD) patients and caregivers Canada
25-minute online survey, compensation is 50 CAD
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
Primary Biliary Cholangitis (PBC) patients Italy
30-minute web-assisted phone interview
Spain
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 $13 million dollars since 2013 for participating in research studies.
