What's New at Rare Patient Voice?
Study Results
Earlier this year, Rare Patient Voice surveyed 2,036 patients and family caregivers on their feelings regarding direct-to-consumer (DTC) television advertisements for treatments and medications. The findings were presented by RPV’s Pam Cusick at a conference this past spring, and some of them may surprise you. Here are the key takeaways of the report (which can be accessed in its entirety here):
- Overall, patients and family caregivers had mostly positive feelings about DTC TV advertisements for treatment and medications.
- Patients strongly prefer seeing other real patients in commercials.
- Realism, honesty, and facts are valued.
- Commercials result in brand recognition, which results in patients mentioning brands to their doctors. In fact, over half responded as having asked their doctor about a treatment or medication based on seeing it in a TV commercial.
Didn’t Qualify? We Still Value Your Time
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, Brittany!
Partner Corner
SelfiHealth is a mobile app that fosters meaningful peer health support relationships by matching people based on their health concerns and what they have in common as individuals. Patients can chat with their matches in an intimate setting in order to lean on each other for support and guidance. Patients are also connected with trusted healthcare organizations that provide resources, including live educational events, relevant to their health and personal interests.
SelfiHealth was founded by Zach Gotlib and Jared Firestone, two young survivors of heart disease and stroke, who are seeking to ensure the next generation of patients can find the peer support that they struggled to find in their own health journeys.
For more information, visit https://www.selfihealth.com/.
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 Chris Cramer, Assistant Project Manager for Rare Patient Voice.
Hailing originally from Maryland, Christopher Cramer earned his BS from Towson University. He joined Rare Patient Voice in March 2021. As Assistant Project Manager, he works with clients, patients, and fellow RPV team members to ensure projects run smoothly, and takes pride in doing so.
“I enjoy developing positive working relationships with our clients, and then maintaining those relationships over the long-haul. Often, studies will consist of multiple phases (which we call 'waves'), affording me the opportunity to work with some familiar faces, time and again! It is through these repeated interactions that I can fine-tune our ability to meet the unique expectations of our clients,” says Christopher.
A man who loves the water, Christopher spends most of his weekends at the beach swimming and surfing, weather permitting. He resides in Northern Virginia with his girlfriend Hannah and their two cats, Ripley and Ginkgo, and loves music and good science fiction.
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 adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Achondroplasia Caregivers United States
10 minute online survey, compensation is $25
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
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Asthma or Chronic Obstructive Pulmonary Disease (COPD) caregivers United States
75-minute web-assisted phone interview (WATI) + 25-minutes homework, compensation is $200
Bardet Biedl Syndrome (BBS) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $100
Bladder Cancer, Gastric Cancer (Stomach Cancer), Head & Neck Cancer, Melanoma, Non-small cell Lung Cancer (NSCLC), Renal Cell Carcinoma, or Triple-negative Breast Cancer (TNBC) caregivers United States
30-minute online survey, compensation is $60 Gift Card
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 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.
Breast Cancer (stage II, III or IV) non-caucasian patients United States
60-minute web-assisted zoom interview (WATI) + pre-task , compensation is $230
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 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
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 patients United States
Online community, compensation $50 welcome gift card and $60 for online community activities
Cystic fibrosis (CF) patients (18+) United States
30-minute online survey, compensation is $50 electronic gift card
Diffuse Large B Cell Lymphoma (DLBCL) patients United States
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Endometrial Cancer (stage III or IV) non-caucasian patients United States
60-minute web-assisted zoom interview (WATI) + pre-task , compensation is $230
Endometrial (Uterine) Cancer patients United States
60-minute web-assisted zoom interview (WATI), compensation is $150
Eosinophilic Esophagitis (EOE) Caregivers (Ages 1-17) & Patients (Ages 18-60) United States
60-minute web-assisted phone interview, compensation is $120
Fabry Disease patients and caregivers United States
60-minute web-assisted phone interview (WATI) + 30-minute homework, compensation is $180
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Growth Hormone Deficiency, Noonan Syndrome, Small for Gestational Age (SGA) patients and caregivers United States
90-150-minute in-person interview, compensation is $180-$300
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
Hepatitis B (Hep B) and HIV patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hepatitis C patients United States
45-minute web-assisted zoom interview (WATI), compensation is $90
Hepatitis D patients United States
30-minute activities during a 2-3 week time period, compensation is $60
Hereditary Spastic Paraplegia (HSP) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
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
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
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
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
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 United States
60-minute web-assisted phone interview (WATI), compensation is $120
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
Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
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).
Ocular Myasthenia Gravis (OMG) patients United States
60-minute online community (approx. 20-minutes a day for 3 days), compensation is $190
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
Pancreatic Cancer patients United States
90-min web-assisted phone interview (plus a 30-min homework assignment) compensation is $225
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)
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
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) male patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Spinocerebellar Ataxia (SCA) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Turner Syndrome patients and caregivers (adolescent patients) United States
90-minute in-person interview, compensation is $300
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 (WATI), compensation is $105
Wet Macular Degeneration patients United States
60-minute web-assisted zoom interview, compensation is $120
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
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
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
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.
