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. Here we will share highlights from a recent study we did on market access issues experienced by Type 1 Diabetes (T1D) patients. Many of you participated in this study. Thank you!
Market access is a key determinant of success of the entry of new products into the bio-tech world. Often companies will explore reactions by physicians and payers, but the viewpoint of patients is extremely important. This study looked at market access issues from a Type 1 Diabetes perspective, but much of the learning will apply to other diseases and conditions.
- Virtually all respondents had some insurance coverage (private or public), yet access issues remain.
- A majority had been made to switch medication or treatment by insurers, and for 16% switching medications made them worse.
- T1D patients use 6 or more items, the majority were partially covered.
- The average T1D patient is paying over $300 per month out of pocket.
- Out-of-pocket costs were mentioned most often as obstacles to better care, followed by insurance delaying or not covering treatments.
- A majority reported that mental health visits were covered.
- There is a lack of knowledge regarding Diabetes Self-Management Training/Education (DSMT/E).
- One-third of patients used copay coupons/assistance/discounts. Few used them to pay down the deductible.
- Many with decent coverage had complaints about the quality of care, and of the hassles of dealing with insurance companies.
- T1D is taxing physically, emotionally, mentally and financially and needs to be constantly monitored. Many patients also suffer from other conditions as well.
Help Us Name Our Mascot!
Rare Patient Voice now has a mascot and he or she needs a name! Please offer your suggestions. Whoever is the first to offer the winning suggestion will get a $100 Amazon card.
We picked a zebra as that is the symbol of rare diseases. Medical students are taught, when diagnosing diseases, if you hear hoofbeats, assume horses, not zebras. But our 100,000 patients and caregivers know that many times it is a zebra!
If you would like to submit a name, please click here: [Link removed - submission has ended]
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
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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!
Please note: These studies may no longer be open. For the latest studies, please visit the Study Opportunities page.
Fabry Disease
Patients
60 Min Phone Interview and Compensation is $100
Cerebral Palsy
Patients
60 Min In-Person Philadelphia Area
Compensation is $150 + parking validation
Focal Segmental Glomerulosclerosis (FSGS)
Patients
60 Min Phone Interview and Compensation is $100
Severe Primary IGF-1 Deficiency (Via Human Growth)
Caregivers
60 Min Web-Assisted Phone Interview and Compensation is $125
Short Bowel Syndrome
Patients
60 Min Web-Assisted Phone Interview and two pre-interview assignments
and Compensation is $190
Epidermolysis Bullosa
Caregivers
75 Min Web-Assisted Phone Interview and Compensation is $100
Legg-Calve Perthes
Caregivers
60 Min Web-Assisted Phone Interview and Compensation is $100
Lymphoma
Patients who had CAR T Therapy
60 Min Phone Interview plus 10 Min Homework and Compensation is $120
Aortic Stenosis
Patients
25 Min Online Survey and Compensation is a $25 Amazon Gift Card
Amblyopia (lazy eye)
Caregiver & their Pediatric Patient
60 Min Web-Assisted Phone Interview and Compensation is $100 for both participants
Achondroplasia
Parents of Children ages 3-13
90 minute webcam interview and Compensation is $150
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.
