What's New at Rare Patient Voice?
Curious Why You Didn’t Qualify for a Study?
We realize it is disappointing when you don’t qualify for a study. In this video, RPV President Wes Michael explains why you may not have qualified for a study, why it’s nothing to take personally, and the monthly raffle you are automatically entered into.
We Still Value Your Time, Even If You Don’t Qualify
We appreciate your participation and being part of the RPV community, even if you don'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, Lisa!
Partner Corner
Epilepsy is the fourth most common neurological disorder and 1 in 26 people will experience a seizure in their lifetime. With over forty types of seizures and no known cure, epilepsy can strike anyone, anytime, and anywhere. Education, community awareness, and dispelling the myths and misconceptions surrounding seizures is vitally important. The mission of JoshProvides Epilepsy Assistance Foundation is, “To improve the quality of life for those living with epilepsy and other seizure disorders.”
JoshProvides assists children, families, and individuals with seizure detection & alert devices, transportation to medical appointments while they are prohibited from driving, medical services, and community education & awareness. Each program has specific criteria and a funding cap. In addition, JoshProvides sponsors an Epilepsy Support Group which meets virtually twice a month to keep families and individuals connected to community and share local resources. The Epilepsy Support Group offers a community connection and resources to combat social isolation too often associated with epilepsy.
For details about our programs and services and learn about our funding criteria and caps, visit our website at www.JoshProvides.org or call 1-800-706-2740.
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! This month, meet Cheryll Davies, Assistant Project Manager for Rare Patient Voice.
A graduate of Pennsylvania’s Marywood University with a BFA in Graphic Design, Cheryll worked as a graphic artist and customer workflow coordinator at a local newspaper after college. Working in a customer focused role for over a decade prepared Cheryll to cultivate relationships with new and standing clients in her position at Rare Patient Voice, which she took on in 2022.
“I am proud to work at RPV because I know our work here is truly making a difference in the lives of patients and caregivers. My personal experience having a loved one diagnosed with a rare condition offers me the perspective to really connect with the many patients and family caregivers with whom I come into contact.”
In addition to taking motorcycle trips with her fiance and spending time with their puggle, Daisy, Cheryll enjoys baking, gardening, and crafting.
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
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 adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Ankylosing Spondylitis, Plaque Psoriasis, Psoriatic Arthritis or Rheumatoid Arthritis Patients who use Stelara, Simponi ARIA, Tremfya, Simponi injection United States
10-minute online survey, compensation is $25
Antisynthetase Syndrome, Dermatomyositis, Immune-Mediated Necrotizing Myopathy, Myasthenias patients United States
60-minute web-assisted phone interview, compensation is $120
Asthma or Chronic Obstructive Pulmonary Disease (COPD) caregivers United States
75-minute web-assisted phone interview (WATI) + 25-minutes homework, compensation is $200
Avoidant Restrictive Food Intake Disorder (ARFID), Cancer, Cerebral Palsy, Cystic Fibrosis, Irritable Bowel Syndrome (IBS) caregivers (Ages 18 Months to 3 Years) United States
90-minute web-assisted phone interview plus a 30-minute diary, compensation is $180 for the interview and $60 for the diary
Bladder Cancer Patients and Caregivers United States
60 minute web-assisted phone interview plus possible mobile ethnography, compensation is $150 for the interview and $250 for completion of the mobile ethnography
Bone Marrow Transplant, Collagen Vascular Disease, Graft Versus Host Disease (GVHD), Organ Transplant or Systemic Sclerosis (Scleroderma) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Breast Cancer, Multiple Sclerosis (MS), Paroxysmal Nocturnal Hemoglobinuria (PNH), Psoriasis Patients United States
20-minute online survey, compensation is $40
Breast Cancer patients (ages 35-75) United States
20-minute online survey, compensation is $40
Breast Cancer patients United States
This is a 5-minute online survey for free access to a medical record collection service.
Cerebral Amyloid Angiopathy (CAA) caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Cervical Cancer patients (diagnosed withing the last 5 years) United States
60-minute web-assisted phone interview (WATI) + 15-minute homework, compensation is $150
Chronic or Congestive Heart Failure patients (40-64 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Patients and Caregivers United States
30-45 minute web-assisted phone interview, compensation is $60-$90
Chronic Kidney Disease (CKD) Patients United States
30-minute online survey + confirmation of diagnosis required (COD), compensation is $110
Chronic Obstructive Pulmonary Disease (COPD) Hispanic Patients United States
30-minute web-assisted phone interview, compensation is $60
Chronic obstructive pulmonary disease (COPD) Patients and Patients/Caregiver Duos - Los Angeles and surrounding area United States
80-minute in-person interview, compensation is $240
Chronic Spontaneous or Idiopathic Urticaria patients United States
60-minute online interview, compensation is $125 (interview) and $50 (POC-proof of confirmation)
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Colorectal (Colon) Cancer Patients and Caregivers Stage IV United States
15-min pre-test & 60-min web-assisted phone interview via Zoom, compensation is $125
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Coronary Artery Disease (CAD) patients ages 60-75 United States
60-minute web-assisted phone interview + 10-minute pre-work, Compensation is $120 + $25 for pre-work
Crohn's Disease (CD), Eczema, Juvenile Idiopathic Arthritis, Psoriatic Arthritis (PsA) or Ulcerative Colitis adolescent patients and caregivers (living in Philadelphia) United States
30-minute training & 75-minute interview or a 75-minute interview, compensation training is $100, interview is $225
Crohn's Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Diffuse Large B Cell Lymphoma (DLBCL) patients United States
Down Syndrome and Alzheimers Caregivers United States
10-minute online survey, compensation is $25
Duchenne Muscular Dystrophy (DMD) Caregivers of Patients under age 5 United States
60-minute web-assisted phone interview, compensation is $120
Duchenne Muscular Dystrophy (DMD) Patients and Caregivers (Caregivers must be for Patients under age 30) United States
60-minute web-assisted phone interview, compensation is $120
Eczema Patients United States
60-minute web-assisted phone interview, compensation is $120
Eosinophilic Esophagitis (EOE) Caregivers (Ages 1-17) & Patients (Ages 18-60) United States
60-minute web-assisted phone interview, compensation is $120
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Growth Hormone Deficiency patients and caregivers (3-12 years) United States
45-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), compensation is $125
Heart Disease patients (Los Angeles, CA; New Orleans, LA) United States
In-person interview, compensation is $180/hr
Hemophilia A & B Patients & Caregivers United States
30-minute online survey, compensation is $60
Hemophilia B patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hemophilia patients and caregivers United States
60-minute in-person interview, compensation is $225
Hepatitis D patients United States
30-minute activities during a 2-3 week time period, compensation is $60
Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $180
HIV non-caucasian patients United States
20 minute online survey, compensation is $40
Huntington'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
Huntington’s Disease, Tardive Dyskinesia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Idiopathic Pulmonary Fibrosis (IPF) United States
60-minute web-assisted phone interview (WATI), compensation is $120
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
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Immune Thrombocytopenic Purpura (ITP) Patients United States
60-minute web-assisted phone interview, compensation is $120
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), OR Pulmonary Fibrosis (PF) patients (currently using or have used Tyvaso Nebulizer or Tyvaso DPI) United States
60-minute web-assisted zoom interview (WATI), compensation is $120
Juvenile Arthritis (JA) or Giant Cell Arteritis (GCA) adolescent patients or caregivers of adolescents United States
60-75-minutes in-person interview, compensation is from $150
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Melanoma Non-Caucasian Patients United States
60-minute web-assisted phone interview + tech check, compensation is $125
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
Mitochondrial Myopathy Patients United States
60-minute web-assisted phone interview, compensation is $125
Multiple Sclerosis (MS) Patients under 35 United States
60-minute web-assisted phone interview, compensation is $120
Multiple Sclerosis patients United States
25-minute online survey, compensation is $50
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Myasthenia Gravis caregivers United States
45-minute online survey, compensation is $90
Myasthenia Gravis (MG) patients (diagnosed in last 2 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Myasthenia Gravis (MG) Patients Ages 50 and under diagnosed within the last 3 years United States
60-minute web-assisted phone interview, compensation is $120
Narcolepsy, Idiopathic Hypersomnia Male Patients United States
Two 60-minute web-assisted phone interviews, compensation is $100 initial interview and $150 followup interview
Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
Neuromyelitis Optica (NMO) Patients United States
45-minute online survey, compensation is $90
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Nontuberculous Mycobacterial (NTM) patients United States Eligible study participants will be paid up to $450 ($300 for participation in a 2-hour study interview [can be completed in two 1-hour sessions] and $150 for an additional 1-hour study interview).
Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30
Overactive Bladder (OAB) patients (have used Botox) United States
60-minute web-assisted phone interview (WATI), compensation is $200
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients (17-25 years) that are using an infusion pump or are pump-experienced (living in Los Angeles or Phoenix) United States
6-hour in-person interview, compensation is $750
Relapsing Remitting Multiple Sclerosis (RRMS) Spanish speaking patients United States
60-minute web-assisted phone interview, compensation is $150
Renal Cell Carcinoma (RCC) Patients United States
30-minute online-survey, compensation is $80
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Spinal Muscular Atrophy (SMA) Caregivers United States
45-minute online survey, compensation is $90
Spinal Muscular Atrophy Patients United States
30-minute online survey, compensation is $55
Spinocerebellar Ataxia (SCA) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Stomach Cancer Patients United States
30-minute voice-response survey (10-minute survey + 20-minute VRS), compensation is $60 Amazon Gift Card
Vasculitis patients United States
90-minute web-assisted phone interview (WATI), compensation is $158
Wet Macular Degeneration Patients United States
60-minute web-assisted phone interview, compensation is $120
Wet Macular Degeneration patients United States
60-minute web-assisted phone interview (WATI), compensation is $105
United Kingdom
Amyloidosis patients United Kingdom
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $198.65
Hepatitis D patients United Kingdom
30-minute activities during a 2-3 week time period, compensation is $60
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD
Idiopathic Pulmonary Fibrosis (IPF) United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 100 GBP
Secondary Immune Deficiency (SID) Patients United Kingdom
60-minute web-assisted phone interview + 15-minute prework, compensation is 75 GBP (interview) + 20 GBP (prework)
Spinal Muscular Atrophy (SMA) Caregivers United Kingdom
45-minute online survey, compensation is 75 GBP
Wet Macular Degeneration patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 49 GBP
Canada
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Amyloidosis patients Canada
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $275
France
Hemophilia A patients France
30-minute web-assisted phone interview (WATI), compensation is 55 EUR
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 80 EUR
Wet Macular Degeneration patients France
60-minute web-assisted phone interview (WATI), compensation is 40 Euro
Germany
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Germany
5-hour web-assisted phone interview (WATI), compensation is 250 EUR
Hemophilia A patients Germany
30-minute web-assisted phone interview (WATI), compensation is 55 EUR
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Secondary Immune Deficiency (SID) Patients Germany
60-minute web-assisted phone interview + 15-minute prework, compensation is 80 EUR (interview) + 20 EUR (prework)
Spinal Muscular Atrophy (SMA) Caregivers Germany
45-minute online survey, compensation is 85 EUR
Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros
Wet Macular Degeneration patientsGermany
60-minute web-assisted phone interview (WATI), compensation is 50 Euro
Italy
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Italy
5-hour web-assisted phone interview (WATI), compensation is 480 EUR
Idiopathic Pulmonary Fibrosis (IPF) Italy
60-minute web-assisted phone interview (WATI), compensation is 115 EUR
Spinal Muscular Atrophy (SMA) Caregivers Italy
45-minute online survey, compensation is 85 EUR
Wet Macular Degeneration patients Italy
60-minute web-assisted phone interview (WATI), compensation is 54 EUR
Spain
Idiopathic Pulmonary Fibrosis (IPF) Spain
60-minute web-assisted phone interview (WATI), compensation is 115 EUR
Wet Macular Degeneration patients Spain
60-minute web-assisted phone interview (WATI), compensation is 37 EUR
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?
As of January 1, 2023, you will earn $120 per hour (typically) for participating in new studies. We pay by check to ensure patients can use their compensation in any way they wish.
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.
