What's New at Rare Patient Voice?
Study Results
It’s been a long two years, with COVID19 impacting life as we know it in ways large and small. Patients and caregivers have certainly been affected, and Rare Patient Voice has surveyed them on what that has been like, first in July 2020 and then in February 2022. One factor that has emerged as a positive has been the rise of telehealth. Recently, RPV’s President Wes Michael gave a presentation at the 2022 Human Factors and Ergonomics Symposium in New Orleans, LA, “Patient Perceptions of Telehealth - Early COVID to Now,” based on those two studies. The following are some key takeaways from Wes’s presentation.
Overall, most patients who had telehealth visits reported being pleased with the experience.
Telehealth was perceived as safer than medical office visits.
But telehealth also has its pitfalls and is not a substitute for all in-person visits.
In conclusion:
- A majority of our patients have used telehealth and they give it good ratings.
- In-person visits are still the gold standard, and are required for many appointments.
- Convenience is a chief draw for telehealth – unrelated to Covid.
- In-person visits create pain and stress for many patients.
- Patients want to have access to telehealth after Covid.
- Many patients crave the personal attention they get from in-person visits.
Record a Video, Receive Rarity!
Help us spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As thanks 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! Congratulations to Shelby of OK, our winner for March!
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!
New on the Bookshelf
This month, RPV’s Wes Michael reviews a new children’s book, Life’s a Polyp, which centers on life with Familial Adenomatous Polyposis (FAP).
Life’s a Polyp with Zeke and Katie
Written by Jenny Jones, Illustrated by Sadie Peers
Zeke was a normal little boy living a normal little boy’s life when things began changing for the worse. “Life’s a Polyp” takes us through the downs and ups of Zeke’s story. It explains Familial Adenomatous Polyposis (FAP) and its implications, which if untreated will cause cancer. Zeke has a lot of treatments to endure, but fortunately he meets a little girl, Katie, who has also gone through it. Zeke learns he also needs mental health counseling to live with FAP, and that there are even special camps for kids with diseases like FAP.
“Life’s a Polyp” is lovingly written by FAP advocate Jenny Jones, with inviting color illustrations by Sadie Peers. It does not shy away from confronting the disease and its symptoms directly. What a great contribution to help families and especially kids deal with such a troublesome condition. Jenny was diagnosed with FAP and Short Bowel Syndrome as a child and she has taken from her experience to help others with those conditions.
The book also includes many online sources of information on FAP, as well as helpful definitions. A portion of the profits from the sales of the book will be donated to the National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund.
–Wes Michael, Rare Patient Voice
Partner Corner
Ronald McDonald House Charities of Central Florida (RMHCCF) finds, creates, and supports programs that directly improve the health and well-being of children and families. Before the Ronald McDonald House program was established in Orlando, families were sleeping in chairs in hospital waiting rooms or in their cars, and eating out of vending machines to be close to their children who were undergoing life-saving treatment at area hospitals. RMHCCF now operates houses on the campuses of Orlando's three pediatric hospitals making Orlando just the sixth city to have three or more Ronald McDonald Houses. Today, we operate the three Houses with a total of 84 bedrooms—23 bedrooms at AdventHealth for Children, 37 bedrooms at Arnold Palmer Hospital for Children, and 24 bedrooms at Nemours Children's Health, serving thousands of families annually and saving them over $3.35 million in costs. Since 1996, our mission has grown to serve more than 35,000 families. The families who have stayed at the Houses have represented 68 countries and all 50 states. Approximately 50% of our families are from the nine-county Central Florida area.
Our cornerstone program, the Ronald McDonald House, provides a home away from home for families with children receiving treatment at hospitals and medical facilities in Orlando. When a child is seriously ill, families face extensive medical treatment, hectic schedules, and financial burdens. RMHCCF allows families to stay just steps away from their children in the hospital. Each family has a private room and access to a fully equipped kitchen, a well-stocked pantry, and an immediate support system of other families, staff and volunteers. These benefits are not lost on our families. “It made us very relaxed knowing one of us could always be with Melody and one with Sofia. The most important thing was how much it helped keep our family together. It really is a home away from home.”
To learn more about Ronald McDonald House Charities of Central Florida, please visit https://www.rmhccf.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
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.
- 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
IgA Nephropathy (Berger’s Disease) patients United States CHP_6568
60-minute web-assisted phone interview, compensation is $100
Ulcerative Colitis patients United States DYN_6679
45-minute online survey, compensation is $75
Amyotrophic Lateral Sclerosis (ALS) caregivers United States EMI_6567_Ph_2
30-minute online survey, compensation is $50
X-Linked Hypophosphatemia (XLH) patients United States CLIN_6516
45-minute survey, compensation is $125
Eczema patients United States PSL_6633
15-minute online survey, compensation is $25
Caregivers of adolescents (9-17 years) with clinical trial participation United States INV_6573
20-minute voice response survey, compensation is $35
Immune Thrombocytopenic Purpura patients United States SHG_6647
30-minute phone interview, compensation is $100
Interstitial Lung Disease or Pulmonary Fibrosis patients United States SKIM_6625
90-minute zoom interview, compensation is $150
Cancer study for caregivers of children 0-12 years United States PRC_6629
90-minute web-assisted phone interview, compensation is $150
Immune Mediated Necrotizing Myopathy (IMNM) patients United States AFS_6570
60-minute web-assisted phone interview, compensation is $100
Stroke: Post-stroke spasticity patients United States INC_6630
5-minute online survey, compensation is $20
Complement 3 Glomerulopathy (C3G) patients United States LUMA_6611
75-min web-assisted phone interview (plus an online survey), compensation is $125
Polycythemia Vera (PV) patients United States INV_6459
35-minute voice response survey, compensation is $35
Eczema male patients United States M3_6595
60-minute web-assisted phone interview, compensation is $125
Ankylosing Spondylitis or Non-Radiographic Axial Spondyloarthritis patients United States M3_6617
60-minute web-assisted phone interview, compensation $100
Vitiligo patients & caregivers United States GP_6621
60-minute phone interview with children ages 6-12 years old, who have been diagnosed with vitiligo, (their caregiver must be present for the interview), compensation is $125
Spinal Muscular Atrophy patients & caregivers (of infants) United States PSL_6574
60-minute web-assisted phone interview, compensation is $100
Spinal Muscular Atrophy (SMA) patients & caregivers United States ZS_3610_W1_2022
30-minute online survey, compensation is $50
Narcolepsy Type 1 with Cataplexy male patients United States LR_6578
30-minute online survey, compensation is $45
Binge Eating Disorder patients United States HV_6546
30-minute screening call to determine eligibility for yearlong community that pays $100 per hour of participation. Compensation for the screening call is $35
Polymyositis patients United States TRP_6518
60-minute web-assisted phone interview, compensation is $100
Prostate Cancer patients United States GP_6565
60-minute web-assisted phone interview, compensation is $150
Parkinson's Disease patients & caregivers United States M360_6434
30-minute online survey, compensation is $50
HIV Pre-Exposure Prophylaxis (PrEP) patients United States ALP_6564
60-minute web-assisted phone interview, compensation is $100
Prurigo Nodularis (PN) patients United States COM_6544
Online community compensation is $10 as a welcome when you join the community and participate in the community. Additional compensation opportunities will arise for community members that are active.
Pulmonary Arterial Hypertension (PAH) patients United States QUAM_6327
60-minute zoom interview, compensation is $100
Progressive Supranuclear Palsy (PSP) patients (age 40+) & caregivers United States HV_6537
120-minute web-assisted phone interview (plus a 30-min. pre-task), compensation is $250
Urinary Tract Infection (UTI) patients United States PHARV_6554
60-minute web-assisted phone interview, compensation is $100
Autosomal Dominant Polycystic Kidney Disease (ADPKD) patients United States IPS_6513
60-minute phone interview, compensation is $150
Bladder Cancer – Non-Muscle Invasive Bladder Cancer patients & caregivers United States AFS_6548
60-minute web-assisted phone interview, compensation is $175
Breast Cancer patients United States ZS_6522
60-minute online forum, compensation is $100
Looking for patients from the Chicago & Schaumburg area that are on the following medications: Aimovig, Repatha, or Enbrel United States FW_6520
60-minute in-person interview, compensation is $150
Non-Small Cell Lung Cancer (NSCLC) patients United States LAG_6511
60-minute webcam interview (plus homework), compensation is $200
Paroxysmal Nocturnal Hemoglobinuria patients & caregivers United States TRI_6197
60-minuteweb-assisted phone interview, compensation is $100
WHIM Syndrome patients & caregivers United States RMR_6517
60-minute web-assisted phone interview, compensation is $100
Psoriasis patients United States GP_6305
30-minute online survey compensation is $50
Multiple Myeloma patients United States GP_6473
90-minute web-assisted phone interview (or two 45 min interviews if the patient prefers), compensation is $210
Ankylosing Spondylitis male patients United States GP_6502
45-min web-assisted phone interview (physician confirmation of diagnosis is required to qualify and be paid), compensation is $135
Diffuse Large B-Cell Lymphoma (DLBCL) patients & caregivers United States CHP_6501
60-minute web-assisted phone interview, compensation is $100
Burkitt Lymphoma or B-Cell Lymphoma patients United States RP_6484
2-minute online survey no reward
Hemophilia A patients & caregivers living in Dallas, LA, or Chicago United States SCH_6385
In-person Interview (length and compensation vary)
Hemophilia patients & caregivers United States REAC_6423
5-min online survey with no compensation (some participants may be selected for an in-person study)
Thyroid Eye Disease (TED) male patients United States 21G_6335
Year-long study (consists of 4 web-assisted phone interviews), payment upon completion of tasks
Pemphigus Vulgaris (PV), Granulomatosis with Polyangiitis (GPA) patients United States EVR_6306
15-minute online survey, compensation is $20
Liver Conditions - Autoimmune Hepatitis (AIH), Hepatitis B, Hepatitis C, NASH, NAFLD or Primary Sclerosing Cholangitis (PSC) United States XYZ_6258
150-minute online survey and daily diaries, compensation is $275
Uterine Fibroids patients United States IPS_6179
60-minute web-assisted phone interview, compensation is $100
Amyotrophic Lateral Sclerosis (ALS) patients & caregivers United States PICH_5650
5-10-minute online survey for medical history platform, compensation is $25
Pompe Disease patients United States PICH_5652
5-minuteonline survey for medical history platform, compensation is $20
Multiple Sclerosis (MS)patients & caregivers United States PICH_4373_W2
5-minute online survey for medical history platform, compensation is $25
Vulvar HSIL patients United States RTI_5017
30-minute online survey, compensation is $100
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States PHO_2397
30-minute online survey, compensation is $50
Organ Transplant patients United States AV_5244
60-minute phone interview, compensation is $120
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 $100 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 $8 million dollars since 2013 for participating in research studies.
