What's New at Rare Patient Voice?
A Note to Our Readers
At RPV, we support all patients, family caregivers, and everyone living with visible as well as invisible disabilities. To that end, we are aware that some may experience accessibility issues with this very newsletter. Please know that we are currently working on a solution, and in the meantime, the monthly newsletters are available on our website here: https://rarepatientvoice.com/for-patients/newsletters/.
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, Vicki!
Partner Corner
Through Sisters’ Hope Foundation, we envision a world where those affected by HDLS/ALSP have support and knowledge, leading to a better quality of life and one day, the first survivor of HDLS/ALSP. Learn more: https://sistershopefoundation.org/
Referrals
Would you be interested in becoming a valued referral partner by promoting Rare Patient Voice and encouraging others to participate in research? As a referral partner, you play a pivotal role in recruiting patients and family caregivers to participate in all types of research studies. For each successful referral who signs up through your referral link, you will be eligible to receive compensation of $10 USD. Click here for more information and to sign up to be an RPV referral partner.
Staff Spotlight
Ginger Segala earned a BA from the University of Maryland, College Park and her Masters in Social Work from the University of Maryland, Baltimore. As a member of the Rare Patient Voice Business Development Team since 2021, she works directly with clients to explain RPV’s service offerings and provides feasibility and pricing for market research studies. Ginger is advocacy focused and strives to increase opportunities for all patients and family caregivers who want to have their voices heard.
“I’m an advocate at heart. My background as a social worker has provided opportunities to advocate for poverty programs, music,and now rare diseases. I particularly love to see new research projects and how great our team works together to help clients fill difficult recruiting gaps.”
Hiking, traveling, and attending concerts are among Ginger’s interests. She especially enjoys spending time with her children, friends, and her four sisters and brother - including her twin!
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
Acromegaly patients ages 18-75 United States
60-minute web-assisted phone interview plus a 15-minute pre-work assignment, compensation is $150
Adolescents ages 16-17 with Achondroplasia and family members caring for those aged 10-17 in the United States
120-minute in-person interview, compensation is $565 to $835
Adolescents with Achondroplasia and their family members in the United States
This is a 5-minute survey for a medical history platform.
Adult Cancer Screening Study: Patients aged 45+ in the Oakland, CA area United States
90-minute in-home interview, compensation is $180
Alpha 1 Antitrypsin Deficiency (A1AD) patients United States
30-minute online survey, compensation is $60
Alzheimer’s Disease or Cognitive Impairment patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
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
Ankylosing Spondylitis, Hidradenitis Suppurativa, Non-radiographic Axial Spondyloarthritis (nr-axSpA) patients United States
30-minute online survey, compensation is $60
Atopic Dermatitis patients currently taking or who have previously taken Adbry, Cibinqo, or Rinvoq United States
60-minute web-assisted phone interview, compensation is $125
Beta Thalassemia caregivers of patients ages 12-35 United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia adult patients ages 18-35 and caregivers of young adult patients 18-25 United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $145
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $105
Cardiomyopathy patients United States
30-minute online survey, compensation is $60
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients ages 18-75 United States
30-minute web-assisted phone interview, compensation is $100
Chronic Kidney Disease with Cardiovascular Disease patients ages 35-75 and caregivers of patients ages 35-75 United States
Either 140 minutes/2 Interviews and a Diary or a a 90 minute duo Interview, compensation is $275 for 2 interviews and diary or $150 for the duo interview
Chronic Kidney Disease (CKD), Diabetes, High Blood Pressure African American patients in Atlanta, GA; Detroit, MI; New York City, NY United States
150-minute in-person interview, compensation is $450
Chronic Myeloid (Myelogenous) Leukemia (CML) patients and caregivers United States
30-minute online survey, compensation is $60
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
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, Diabetes, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis caregivers of children in Philadelphia, PA United States
75-minute in-person interviews, compensation is $225
Crohn’s Disease (CD), Juvenile Idiopathic Arthritis (JIA) pediatric patients and caregivers of pediatric patients in Alabama (AL), California (CA), Connecticut (CT), Delaware (DE), Florida (FL), Georgia (GA), Hawaii (HI), Idaho (ID), Kentucky (KY), Maryland (MD), Massachusetts (MA), Michigan (MI), Montana (MT), New Jersey (NJ), New York (NY), Ohio (OH), Pennsylvania (PA), South Carolina (SC), Tennessee (TN), Texas (TX), West Virginia (WV), Wisconsin (WI) United States
60-minute in-person interview, compensation is $180
Danon Disease female patients and caregivers of female patients United States
60-minute web-assisted phone interview, compensation is $120
Dermatomyositis, Neuromyelitis Optica (NMO), Polymyositis patients and caregivers in California, Florida, Illinois, North Carolina, Texas, Wisconsin United States
60-minute in-person interview, compensation is $180
Desmoid Tumor patients United States
45-minute online survey, compensation is $90
Dravet Syndrome caregivers United States
25-minute online survey, compensation is $50
Eczema, Lichen Sclerosis (LS), Palmoplantar Pustulosis patients United States
60-minute web-assisted phone interview, compensation is $100
Epilepsy male patients and caregivers of children ages 12-17 United States
60-minute web-assisted phone interview plus a 20-minute pretask assignment, compensation is $120 for the interview and $40 for the pretask assignment
Epilepsy patients and caregivers United States
25-minute online survey, compensation is $50
Esophageal Cancer, Stomach Cancer patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Exocrine Pancreatic Insufficiency patients United States
10-minute online survey, compensation is $30
Gastric Cancer, Stomach Cancer, or Vitiligo patients United States
90-minute focus group, compensation is $150
Generalized Myasthenia Gravis patients and caregivers in Atlanta, GA; Boston, MA; Chicago, IL; Dallas, TX; Nashville, TN; Orlando, FL; Phoenix, AZ; Portland, OR; Seattle, WA; Tampa, FL United States
60-minute in-person interview, compensation is $180 for caregivers and $200 for patients with confirmation of diagnosis
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hemophilia patients United States
15-minute online survey, compensation is $30
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
Hereditary Angioedema Patient Advocacy Groups United States
60-minute web-assisted phone interview, compensation is $240
HIV Spanish-speaking patients in Houston, TX; Los Angeles, CA; Miami, FL; or New York City, NY United States
60-minute in-person interview plus a 30-minute prework assignment, compensation is $240
HIV Spanish-speaking patients United States
60-minute web-assisted phone interview plus a 30-minute prework assignment, compensation is $180
IgA Nephropathy (Berger's Disease) patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Interstitial Lung Disease (ILD) or Pulmonary Fibrosis (PF) male patients United States
Two 60-minute web-assisted phone interviews plus confirmation of diagnosis, compensation is $95 per interview and $50 for confirmation of diagnosis
Migraine patients United States
Online surveys over a 6-10 week period, compensation is $325 to $585
Multiple Myeloma (MM), Non-Small Cell Lung Cancer (NSCLC), or Prostate Cancer patients United States
20-minute online survey, compensation is $40
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
Multiple Sclerosis patients United States
120-minute focus group, compensation is $240
Myasthenia Gravis (MG) male patients United States
45-minute web-assisted phone interview plus pre-work assignment, compensation is $25 (pre-work assignment) and $100 (interview)
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy patients United States
30-minute online survey, compensation is $60
Non-Valvular Atrial Fibrillation (NVAF) African American female patients United States
150-minute online bullentin board, compensation is $300
Obesity patients who have participated in a clinical trial United States
60-minute web-assisted phone interview, compensation is $120
Osteoporosis/Osteopenia patients who currently use or have used Forteo United States
60-minute in-person interview, compensation is $180
Pancreatic Cancer, Stomach Cancer African American patients and caregivers (any ethnicity) United States
60-minute web-assisted phone interview, compensation is $150
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
25-minute online survey, compensation is $50
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
20-minute online survey, compensation is $40
Phenylketonuria (PKU) caregivers for ages 12-17 United States
60-minute web-assisted phone interview plus homework assignment (less than 30-minutes), compensation is $300
Prurigo Nodularis (PN) patients United States
300-minute in-person interview, compensation is $500
Pulmonary Arterial Hypertension (PAH) patients United States
30-minute online survey, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Rhinosinusitis patients and caregivers United States
25-minute online survey, compensation is $50
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $62.50
Schizophrenia patients taking Uzedy United States
60-minute web-assisted phone interview (webcam required), compensation is $100
Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 10-minute pre-work assignment, compensation is $150
Stomach (Gastric) Cancer Stage IV patients and caregivers United States
90-minute web-assisted phone interview, compensation is $250
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
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
Von Willebrand Disease Type 3 caregivers of children ages 12-17 United States
75-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $190
United Kingdom
Epilepsy patients and caregivers United Kingdom
25-minute online survey, compensation is 38 GBP
Multiple Sclerosis patients United Kingdom
120-minute focus group, compensation is 190 GBP
Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP
Sickle Cell Disease (SCD) caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 90 GBP
Canada
Feeding Tube patients age 50+ Canada
60-minute web-assisted phone interview, compensation is $120 USD/$160 CAD
Multiple Sclerosis patients Canada
120-minute focus group, compensation is 320 CAN
Ovarian Cancer patients Canada
60-minute web-assisted phone interview, compensation is 80 CAD
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Canada
60-minute online bulletin board, compensation is 120 CAD
Italy
Rhinosinusitis patients and caregivers Italy
25-minute online survey, compensation is 45 EUR
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
Multiple Sclerosis patients Australia
120-minute focus group, compensation is 360 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 per hour (typically) 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.
