What's New at Rare Patient Voice?
Study Results
Patients play an important role in research, but many are still hesitant to participate in clinical trials. In September, RPV surveyed almost 2,000 patients and family caregivers on what would make taking part in a clinical trial more appealing to them. One highlight from the survey results that was discussed earlier this month in a webinar hosted by the Center for Information & Study on Clinical Research Participation (CISCRP) is the importance of communication. Patients want to be fully informed about the trial and its goals prior to taking part, and also want to receive study results afterwards.
Other aspects of communication that patients and family caregivers noted as desirable included:
- Getting an understanding of the treatment under development
- Having a 24/7 contact for emergencies or concerns relating to the trial
- Having a communication app or platform to use during the trial
- Being able to be in contact with other people in the trial
We 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 will 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 will be notified via email. Congratulations to our latest winner, Nicole!
Share Your Voice and Receive a Rarity!
If you’re part of the RPV community and enjoy participating in research studies, let us know! Check out videos from the growing group of patients and caregivers who have recorded videos about their Rare Patient Voice experience: https://rarepatientvoice.com#sharevoice. To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan with code below with the camera app from your
Apple/Android mobile device or click the link below!
https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
Partner Corner
HealthHIV is a national non-profit working with healthcare organizations, communities, and providers to advance effective HIV and HCV prevention, care, and support through education and training, technical assistance and capacity building, advocacy, communications, and health services research
and evaluation.
HealthHIV leads the HealthHCV initiative (HealthHCV.org), the National Coalition for LGBTQ Health (HealthLGBTQ.org), the National Center for Health Care Capacity Building (HealthCBA.org), and the National Resource Center for Care Coordination and Pozitively Aging with HIV (AgingWithHIV.org).
In HIV prevention, we offer the HealthHIV HIV Prevention Certified Provider (HIVPCP) Certification Program™, the only certification program of the HIV prevention workforce, available at HIVPCPcertification.org. We also administer PleasePrEPme.org, an extensive online repository of PrEP navigation curriculum and training resources for providers tailored to all 50 states, as well as sex-positive HIV prevention resources and live bilingual chat services for patients.
For more information and resources, visit HealthHIV.org.
Referrals?
Would you like to 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! Each month we will feature one RPV staff member. This month, Kirk Munsch, Patient Advocacy Manager, is in the spotlight.
A move and a chance email lead to a momentous opportunity for both Kirk Munsch and Rare Patient Voice several years ago. A Multiple Sclerosis patient himself, Kirk and his wife were familiar with the company, having participated in its patient and caregiver surveys. As he tells it, “After we moved to Colorado, I sent an email to RPV to change my mailing address. Wes Michael (RPV’s president) answered it immediately, and he and I then started a conversation that went from changing my address to working a patient recruitment event in Denver the next weekend. My position in the company evolved from there.”
A passionate patient advocate who can categorically relate to those who have RPV process questions and privacy concerns, Kirk is highly qualified to provide the “yes, you really can get paid for your opinion” answer to questions from patients and caregivers. He loves to attend support group meetings and education events, and to explore venues outside of the norm (including fitness facilities, church functions, and non-medical/disability specific health fairs) to spread the RPV message. In fact, he keeps a folding table in the trunk of his car just for such occasions!
When not recruiting for RPV, Kirk enjoys fantasy golf and football, surfing the web, cycling, and working out. He also considers himself an extreme weather veteran, having experienced tornadoes, hurricanes, and an earthquake!
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
High Cholesterol patients ages 35-75 that are currently on more than one medication to manage cholesterol United States
60-minute web-assisted phone interview, compensation is $100
Pulmonary Arterial Hypertension (PAH) patients age 16+, and caregivers of patients ages 1-17, who are non-Caucasian United States
There will be a preliminary 20-30-minute telephone interview; If you are not selected for focus group sessions, you will be paid $35 for the preliminary interview. If you are accepted into the focus group you will participate in 1-2-hour focus group sessions with 3-4 sessions throughout the year, compensation for the focus group is $100 per hour.
High Triglycerides, High Cholesterol patients United States
60-minute web-assisted phone interview, plus a three-day online journal (two hours' time invested in the diary), and a 30-minute honing call, compensation is $100 for the initial interview, $200 for the online diary, and $50 for the honing call
Lung Cancer patients United States
2.5 hour online journal (with possible opportunities to have follow-up interviews for additional compensation), compensation for the online journal is $335
Cystic Fibrosis caregivers of children who have been diagnosed with Cystic Fibrosis and are aged 2-5 United States
60-minute web-assisted phone interview, compensation is $100
Thyroid Eye Disease, Chronic Granulomatous Disease, Gout patients United States
60-minute web-assisted phone interview, compensation is $100
Atopic Dermatitis, Eczema patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Alpha 1 Antitrypsin Deficiency (A1AD) patients United States
60-minute web-assisted phone interview, compensation is $100
Diabetes Type 2 patients ages 60-75 United States
75-minute web-assisted phone interview, compensation is $125
Hidradenitis Suppurativa (HS), Eczema, Psoriasis, Psoriatic Arthritis (PsA) patients who are currently on Rinvoq or Humira United States
20-minute online survey, compensation is $35
Diffuse Large B-Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Hidradenitis Suppurativa (HS) patients who are HS social media influencers with at least 1k followers United States
3-hour focus group, compensation is $450
Systemic Lupus Erythematosus (Lupus SLE) African American, Asian, or Hispanic patients United States
45-minute web-assisted phone interview, compensation is $75
Hidradenitis Suppurativa (HS) male patients United States
60-minute web-assisted phone interview, compensation is $80
Multiple Myeloma patients (and caregivers of patients) that are on CAR T United States
60-minute web-assisted phone interview, compensation is $100
Multiple Myeloma patients and caregivers aged 40+ United States
60-minute web-assisted phone interview, compensation is $100
Chronic kidney disease (CKD) patients that have been also diagnosed with anemia United States
60-minute phone interview, compensation is $100
Sickle Cell Disease (SCD) patients United States
60-minute web-assisted phone interview, compensation is $100
Non-Small Cell Lung Cancer (NSCLC) patients diagnosed within the last 3 years United States
60-minute web-assisted phone interview, 120 min mobile ethnography, compensation is $100 + $250
Prurigo Nodularis (PN), patients United States
10-minute online survey to see if you qualify for an online community, compensation is a $10 gift card which will be awarded to those that are accepted into the online community, with potential for monthly gift card rewards based on community participation
IgA Nephropathy (Berger’s Disease) patients United States
60-minute web-assisted phone interview, compensation is $100
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) male patients United States
90-minute webcam interview, compensation is $150
Ulcerative Colitis, Crohn's Disease patients using Stelara United States
60-minute web-assisted phone interview, compensation is $100
Intellectual disability, Developmental disability, or Other cognitive impairment patients United States
75-minute web-assisted phone interview, compensation is a $75 Visa gift card
NASH patients United States
60-minute web-assisted phone interview, compensation is $100
Hypoparathyroidism caregivers of adolescent patients United States
45-minute web-assisted phone interview (with both the patient and caregiver at the same time), compensation is $75 (per participant)
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
Spinal Muscular Atrophy (SMA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Ovarian and Fallopian Tube Cancer patients and caregivers United States
25-minute online survey, compensation is $45
Prostate Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Hunter Syndrome, Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), Cytomegalovirus (CMV), Hemophilia A, Short Bowel Syndrome (SBS) patients United States
20-minute online survey, compensation is $35
Bronchiectasis male patients United States
Two day in-person interview, four hours per day, compensation is $1,200 (as well as travel expenses)
Bullous Pemphigoid non-caucasian patients United States
75-minute web-assisted phone interview, compensation is $200
Amyotrophic Lateral Sclerosis (ALS) patients who were recently diagnosed and/or those who noticed symptoms within the last 4.5 years United States
60-minute web-assisted phone interview, compensation is $175
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Spinal Muscular Atrophy (SMA) caregivers United States
45-minute web-assisted phone interview, compensation is $75
Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Amyloidosis: Wild-Type ATTR, hTTR, Familial ATTR, ATTR-CM patients United States
60-minute web-assisted phone interview, compensation is $100
Type 2 Diabetes patients who have a T2D-specific appointment before November 23rd United States
45-minute web-assisted phone interview, compensation is $75
Congestive and/or Chronic Heart Failure patients and caregivers that are age 18+ United States
20-minute online survey, compensation is $35
Graft Versus Host Disease (GVHD) patients and caregivers to patients age 12-17 United States
60-minute web-assisted phone interview, compensation is $100
Myasthenia Gravis patients United States
5-minute online survey for medical history platform, compensation is $25
Endometrial Cancer patients United States
50-minute web-assisted phone interview, compensation is $100
Polycythemia Vera (PV) patients United States
In-person interview located in Chicago (IL), compensation is $720 (plus travel, meal and hotel reimbursement when applicable)
Primary Immunodeficiency (PID) caregivers United States
30-minute online survey, compensation is $50
Esophagitis (EOE) patients that are male and caregivers of teen patients United States
60-75-minute minute web-assisted phone interview, compensation is $100-$125
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Polycythemia Vera (PV) and/or Graft Versus Host Disease (GVHD) patients United States
45-minute web-assisted phone interview, compensation is $75
Multiple Myeloma non-Caucasian patients that are age 55+ United States
60-minute online focus group sessions with 3-4 sessions throughout the year, compensation is $100 per hour of focus group participation
Colorectal (Colon) Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Multiple Myeloma African American patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Mitochondrial Disease patients and caregivers United States
60-minute web-assisted phone interview plus a 45-minute homework assignment, compensation is $175
Non-Small Cell Lung Cancer (NSCLC) non-caucasian patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Myopathy patients United States
60-minute web-assisted phone interview, compensation is $100
Pompe Disease: Infantile Pompe Disease & Late Onset Pompe patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
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)
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)
Lupus Nephritis patients United States
This is a 5-minute survey for a medical history platform and there is no compensation
Immune Thrombocytopenic Purpura (ITP) patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $150 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
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
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
Immunoglobulin A Nephropathy (IgAN) patients United States
60-minute web-assisted phone interview, compensation is $175
Infectious Disease study for those that have been diagnosed with one or more of the following conditions: Malaria, Hep B, Covid, long term/advanced Gonorrhea, or Chronic UTI patients United States
75-minute web-assisted phone interview, compensation is $125
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
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
Urinary Tract Infection (UTI) patients age 60+ United States
30-minute web-assisted phone interview, compensation is $80
Pompe Disease patients United States
5-minute online survey for medical history platform, compensation is $20
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
United Kingdom
High Triglycerides, High Cholesterol patients United Kingdom
60-minute web-assisted phone interview, plus a three-day online journal (two hours' time invested in the diary), and a 30-minute honing call, compensation is 95 GBP for the initial interview, 190 GBP for the online diary, and 45 GBP for the honing call
Canada
Leukemia patients and caregivers Canada
90-minute web-assisted phone interview, plus a 30-minute homework assignment, compensation is 400 CAD
France
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers France
30-minute web-assisted phone interview, compensation is 55 EUR
CLINICAL TRIALS
United States:
Generalized Pustular patients United States
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Eczema (Atopic Dermatitis) patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Non-Small Cell Lung Cancer (NSCLC) United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Hereditary Angioedema (HAE) patients United States
Clinical trial, all study-related costs, including those associated with travel to the study clinic, will be reimbursed
Melanoma patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Caregivers of unvaccinated (COVID-19) children ages 1-5 United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Myelofibrosis adult patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Hodgkin's Lymphoma patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Non-Hodgkin's Lymphoma patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Melanoma, Lung Cancer: Non -Small Cell Lung Cancer (NSCLC) patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/ed1d44e1-c9dc-4846-97d5-ae74331b4488?pv=1&utm_locale=en
Cancer patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
Cytomegalovirus (CMV) United States
Clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/ec2d20f7-e305-4e9a-8ff2-7c1b7d1b198c?pv=1
Neurobehavioral Disinhibition United States
Clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/430a70e6-df78-49aa-91b0-8058b25f90dc?pv=1
Respiratory Syncytial Virus United States
Clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/e2fa61b1-0420-4f7c-a849-b27f1582e32d?pv=1
Epstein Barr Syndrome (EBV) United States
18-month long clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/e895ad22-8d02-45a3-aa56-9b75c25b555a?pv=1&utm_locale=en
Diffuse Large B-Cell Lymphoma United States
Compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/ad761651-5441-4fd0-bfd7-5ab294cd63f1?pv=1
Atopic Dermatitis (Eczema) United States
Compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/614045ca-0c0e-4c51-910b-20f4404fcf59?pv=1&utm_locale=en
Canada
Hereditary Angioedema (HAE) patients Canada
Clinical trial, all study-related costs, including those associated with travel to the study clinic, will be reimbursed
Germany
Generalized Pustular patients Germany
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
France
Generalized Pustular patients France
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Spain
Generalized Pustular patients Spain
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
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 for participating in 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 over $10 million dollars since 2013 for participating in research studies.
