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. A recent study used the data gathered from 229 T1D patients and caregivers. While the study focused on patients with T1D, many of the insights gathered and formulated can be applied to other diseases and conditions. A summary of findings is provided below:
- Insurance plays an important role in the life and treatment of T1D patients and caregivers. They can affect the direction and overall outcomes of these treatments.
- A majority (55%) of the people surveyed report that their insurers have asked them to switch to brands that were not the ones agreed upon with their physicians. Only 1% out of the 55 reported that the new brands were better.
- Over 70% also reported that aside from having limited coverage from their policies, they also encounter delays in insurers’ response times.
- Out of pocket costs remain the top issue when it comes to market access according to T1D patients and caregivers. These people reportedly spend an average of $300 every month for T1D treatment out of their own pockets.
- Only 33% of those surveyed have used copay, drug coupons, or drug discounts. Only a quarter of these people have used these discounts to pay down the deductible.
- In terms of access to the care they need, some patients and caregivers report either having to go 4-5 hours away to find a qualified endocrinologist or needing to go outside their insurer’s network, which means more out of pocket costs.
Partner Corner
Imerman Angels’ mission is to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there. Through a unique matching process, Imerman Angels partners anyone, any age, any gender, anywhere and any cancer type seeking support with someone just like them – a “Mentor Angel”. A Mentor Angel is a cancer survivor or caregiver who most importantly has faced the same type of cancer. This service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.
If you are a cancer fighter, previvor or caregiver and need support, please visit the Imerman Angels website at www.imermanangels.org to register today. Cancer survivors, previvors and caregivers can also register to become Mentor Angels for those in need!
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 180 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 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 be interested!
Diffuse Large B-Cell Lymphoma Patients and Caregivers US CLIN_4646
20 min Survey and Compensation is $100
Generalized Pustular Psoriasis (severe subtype of Psoriasis) Canadian Residents CA LMA_4836
30 min Web-Assisted Phone Interview and Compensation is $50
Allogeneic Hematopoietic Stem Cell Transplant Patients and Caregivers US TRI_4917
60 min Web-Assisted phone Interview and Compensation is $100
Mantle Cell Lymphoma Patients US
60 min Web-Assisted Phone Interview and Compensation is $100 MO_4159
Hemophilia A and B Patients & Caregivers UK INCI_5096
60 min Web-Assisted Phone Interview and Compensation is £ 73
Hemophilia A and B Patients & Caregivers US INCI_5096
60 min Web-Assisted Phone Interview and Compensation is $100
X-linked Hypophosphatemia (XLH) Patients US MI_5091
30 min Online Survey and Compensation is $50
Organ Transplant Patients US AV_5244
60 min Phone Interview and Compensation is $120
Diffuse Large B Cell Lymphoma Patients US MI_5200
150 min Online Bulletin Board and Compensation is $150
Respiratory Syncytial Virus Caregivers US MCY_5250
90 min Phone Interview and Compensation is $150
Myositis Patients US PHARV_5256
60 min Web-Assisted Phone Interview and Compensation is $100
Acute Myeloid Leukemia Patients US GP_5140
90 min Web-Assisted Phone Interview and Compensation is $200
Exocrine Pancreatic Insufficiency Patients US ALP_5252
60 min Phone Interview and Compensation is $100
Autosomal Dominant Polycystic Kidney Disease Patients US INC_5260
45 min Web-Assisted Phone Interview and Compensation is $75
Mitochondrial Disease Patients US GP_5309
60 min Web-Assisted Phone Interview and Compensation is $50
Non-Small Cell Lung Cancer Patients & Caregivers US IQV_5318
60 min Phone Interview and Compensation is $100
Depression Patients Must be on Spravato US M3_5217
60 min Webcam Interview and Compensation is $100
Myelodysplastic Syndrome (MDS) Patients and Caregivers US KLK_5232
45 min Webcam interview and Compensation is $75
Sickle Cell Disease or B-Thalassemia Patients and Caregivers Canada BIO_5314
60 min Zoom Interview and Compensation is 150 CAD
Chronic Kidney Disease Patients US GP_5229
60 min Web-Assisted Phone Interview and Compensation is $125
Ulcerative Colitis MALE Patients US HV_5321
20 min Online Survey and Compensation is $35
Crohn's Disease Patients US ZS_5308
90 min Zoom Interview and Compensation is $219
Mastocytosis (Mast Cell Activating Disease, MCAD) Patients US SHG_5336
60 min Web-Assisted Phone Interview and Compensation is $100
Thyroid Eye Disease (TED) Patients US SRI_5364
20 min Online Surveys and Compensation is $35
Myasthenia Gravis (MG) Patients US DYN_5355
35 min Online Survey and Compensation is $60
Non-Hodgkin's lymphoma, Mantle Cell Lymphoma, or Acute Lymphoblastic Leukemia Patients US ZS_5337
60 min Web-Assisted Phone Interview and Compensation is $100
Sarcoidosis Patients US and UK SYN_5346
60 min Web-Assisted Phone Interview and Compensation is $100 or 75 GBP
Bladder Cancer Patients and Caregivers US IPS_5361
60 min + 75 min + video tasks Webcam Interview and Compensation is $450
Schizophrenia Caregivers US SHG_5347
2 Hour web-Assisted Phone Interview and Compensation is $175
Alpha-1 Antitrypsin Deficiency Patients US IQVIA_3780
20 min Online Surveys and Compensation is $35
Cushing's Disease Patients US TOL_5189
30 min Online Survey and Compensation is $50
Huntington Disease or Tardive Dyskinesia Patients US M3_5317
75 min Phone Interview and Compensation is $125
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.
