What's New at Rare Patient Voice?
Study Results
While Rare Patient Voice does not have access to the results of studies conducted by our clients, we do conduct internal studies from time-to-time and share these results back with those who participated. In a recent study across 15 conditions, patients were asked a number of thought provoking questions about their conditions. One of the questions was: What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?
Here are a few responses from our patients with Rheumatoid Arthritis and their caregivers:
- Probably somebody to talk to in the healthcare field, who have no boundaries, no connections to a pharmaceutical company. Maybe, they could openly discuss medications and what medications would be good for your condition, and what you’re doing now with your condition, and how you can be more insightful into doing more things for your condition.
- There are not a lot of in-person support groups. I have only found one for me. But it’s 50 miles away from me, and so I’m not able to attend. But I wish there were more in-person support groups, like with a doctor or a clinician, someone that you can actually talk to. And have people that go through or you go through every day and just sharing. I think that will be awesome because I have looked for them, but unfortunately there’s not a lot of them.
- I would like to find an app that works for me. I have looked at different apps that sort of track symptoms, and medications, and stuff, and I really haven’t found anything that I liked. But it would be nice to have an app that would be more of a journal that, “Here’s today, and this is my pain level, and did I take any medication today? Did I need this? Which joints are bothering me today?” and et cetera. That would be most helpful for me because then I could look back and see what’s going on. Was it related to? What was the weather like? What the temperature? That sort of thing. I know there are some of those available. I haven’t found one that exactly fits all those needs. But I think for me an app would be the perfect resource that I would use.
- I think having a social group with people with the similar condition would be helpful. I haven’t found an in-person group that I would like to participate in where we meet maybe once a month and talk about things that we go through and talk about encouragement and all that and about living with rheumatoid arthritis.
Partner Corner
The mission of the "Let Life Happen" website is to empower patients and their caregivers and families and friends with knowledge about all aspects of cancer care and treatment from diagnosis to forever. This helps patients in selecting the best course of action for them and empowers them to take control of their lives so that they feel a sense of confidence in what they are undertaking. With successful doctor/patient interactions and conversations, a better outcome will result on both a physical and psychological level and that is everything. I believe that it is time that we start to treat the patient and not just their disease. And by providing information to patients and their helpers and supporters at all levels, everyone knows that they are not alone and that there is a whole network of others there for them when and if they choose to seek such help. For more information, go to: https://www.letlifehappen.
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
https://
Current Study Opportunities
We currently have over 100 studies open for patients and caregivers! A few 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 Debi Crist at debi.crist@rarepatientvoice.com
- If you are NOT a member, please click on the study name to complete the sign-up process and include all medical conditions to be considered for that study and any other relevant studies.
Please feel free to share the link with friends or family who may qualify, and they’ll be invited to join Rare Patient Voice and invited to take part in the study!
NUT Carcinoma Patients
55 min Phone Interview and Compensation is $85
Tyrosinemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125
Breast Cancer Patients
10 min Online Survey and Compensation $25
Foster Care - Looking for those who were in Foster Care
Online Survey 15 minutes and $25 compensation
Hodgkin's Lymphoma Patients and Caregivers
30 min Online Survey and Compensation is $50
Diffuse Large B-Cell Lymphoma Patients
20 min Online Survey and Compensation is $100
Patients on PrEP
20 min Online Survey and Compensation is $35
Nail Psoriasis Patients
45 min Phone Interview and Compensation is $150
Hereditary Hemochromatosis Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) Patients and Caregivers
60 min Phone Interview and Compensation is $100
Psoriasis Patients Canadian Residents
5-hour Online Bulletin Board (1-hour per day) and 5-hour long Journal (mailed) and Compensation is $1000
Non-Small Cell Lung Cancer, Colorectal Cancer, or Pancreatic Cancer Patients & Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Plaque Psoriasis Patients
15 min Online Survey and Compensation is $25
Polymyositis or Dermatomyositis Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Prostate Cancer Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Achondroplasia Caregivers
30 min Online Survey and Compensation is $50
Catheter Patients
15 min Mobile Friendly Online Survey and Compensation is $25
Chronic Kidney Disease or Heart Failure Patients Canadian Residents
60 min Phone Interview and Compensation is $100
Follicular Lymphoma Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Nasal Polyps Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Vitiligo Patients and Caregivers
15 Min Survey w/Voice Response and compensation is $25 Gift Card
Osteoporosis Patients in the US or UK
60 min Web-Assisted Phone Interview and Compensation is $70
Cytomegalovirus Patients for a Clinical Trial
Anal Cancer Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
NASH and Obesity Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Prurigo Nodularis Patients
90 min Web-Assisted Phone Interview and Compensation is $150
Prader Willi Syndrome Caregivers
60 min Phone Interview and Compensation is $100
IgAN Patients
60 min Web-Assisted Phone Interview and Compensation is $150
Generalized Pustular Psoriasis (severe subtype of Psoriasis)
30 min Web-Assisted Phone Interview and Compensation is $50
Rheumatoid Arthritis Patients
20 min Online Survey and Compensation is $35
Multiple Sclerosis Patients
15 min Online Survey and Compensation $25
Ovarian Cancer Patients and Caregivers (Diagnosed in the last 18 months)
60 min Web-Assisted Phone Interview and Compensation is $125
Esophagus (Esophageal) Cancer Patients
75 min Web-Assisted Phone Interview and Compensation is $125
Non-radiographic Axial Spondyloarthritis Patients
Online Community and Compensation is $10
AFib Patients and Caregivers (Patients 65 and older)
75 min Web-Assisted Phone Interview and Compensation is $125
Myelofibrosis Patients
60 min Webcam Interview and Compensation is $100
Chronic Myeloid Leukemia Patients
30 min Online Survey and Compensation is $50
Hemophilia B (with Inhibitors) Patients and Caregivers
45 min Web-Assisted Phone Interview and Compensation is $100
Parkinson's Disease Patients & Caregivers
30 min Online Survey and Compensation is $20
Immune Thrombocytopenia Purpura Patients
50 min Web-Assisted Phone Interview and Compensation is $85
Paroxysmal Nocturnal Hemoglobinuria (PNH) Patients
30 min Web-Assisted Phone Interview and Compensation is $50
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.
How will I be paid?
You will earn $100 (USD) 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. Over the past eight years, Rare Patient Voice has paid patients over $6 Million dollars.
