What do you think?

Rare Patient Voice Current Studies

MaryO Can You Help?, What do you think? , , , ,

Here’s your chance to make your voice heard on your health Issues.

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

Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card

Crohn’s Disease, Diabetes, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis caregivers of children in Philadelphia, PA United States
75-minute in-person interviews, compensation is $225

Crohn’s Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)

Crohn’s Disease, Ulcerative Colitis patients United States
15-minute online survey, compensation is $30

Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Prader-Willi Syndrome (PWS), Small for Gestational Age (SGA), Turner Syndrome patients or caregivers in Boston, Charlotte, Raleigh, and Orlando United States
3-hour in-person interview

Migraine patients United States
Online surveys over a 6-10 week period, compensation is $325 to $585

Osteoporosis/Osteopenia patients who currently use or have used Forteo United States
60-minute in-person interview, compensation is $180

United Kingdom

Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP

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/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.

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 and family caregivers over $13 million dollars since 2013 for participating in research studies.

What Do *You* Think? Only One Urine Test for Cushing’s?

MaryO What do you think? , , , , , , ,

I sure had way more than one urine test, and lots of blood and more but that was a long time ago.  What are your thoughts on this?

Warning sign: Being very overweight can be a sign of Cushing’s syndrome, a hormonal disorder that is often caused by tumors of the pituitary gland. Image:

Being very overweight, having a moon face and a bull neck are signs of Cushing’s syndrome. It is caused by an excess of the hormone cortisol. Researchers from Giessen and Munich have taken advantage of this to make diagnosis easier.

A special form of obesity, Cushing’s syndrome, is now easier to diagnose. Researchers at the University of Giessen and the Ludwig Maximilian University of Munich have shown that this metabolic disease can be detected using a urine test.

Typically, people with Cushing’s syndrome are very overweight, have a noticeably round face and a bull neck. This is caused by an excess of the stress hormone cortisol, which belongs to the steroid group. The researchers examined urine from Cushing’s patients at the Munich University Hospital using gas chromatography and mass spectrometry. This made it possible to determine the hormone status that is characteristic of the disease. The urine test is simple and provides quick results. So far, several blood samples and sometimes even a hospital stay have been necessary to detect the syndrome.

From https://www.breakinglatest.news/health/cushings-syndrome-can-be-detected-with-a-urine-test/

💰Study Opportunity for Cushing’s Patients

MaryO Can You Help?, What do you think? , , , , ,

This is a 30 min Online Survey and Compensation is $50.00

Sign up at this link to receive an email invite to the study and see if you qualify.

＄Growth Hormone Study Opportunity

MaryO Interviews, Meetings and Conferences, What do you think? , ,

 

Here’s your chance to make your voice heard on Growth Hormone Issues.

Anyone interested would sign up with Rare Patient Voice using the CushingsHelp referral Link. You would then get an email invite to the actual study.
Study Opportunity for Idiopathic Short Stature (ISS) Caregivers
This is a 30 min online survey and Compensation is $50
Please sign up at the link below for more information or to see if you qualify
https://rarepatientvoice.com/CushingsHelp/

💊 Top Doctors Receiving Payments From Corcept, makers of Korlym

MaryO What do you think? , , ,

 

Top Doctors Receiving Payments From this Company

Totals listed account for all payments from August 2013 to December 2016.

DOCTOR PAYMENTS
PEJMAN COHAN

Endocrinology, Diabetes & Metabolism

BEVERLY HILLS, CA

 $116K
RICHARD AUCHUS

Internal Medicine

ANN ARBOR, MI

 $50,682
TODD FRIEZE

Endocrinology, Diabetes & Metabolism

BILOXI, MS

 $40,012
ALAN COHEN

Endocrinology, Diabetes & Metabolism

MEMPHIS, TN

 $38,156
AMIR HAMRAHIAN

Endocrinology, Diabetes & Metabolism

CLEVELAND, OH

 $36,287
KIMBERLEY BOURNE

Endocrinology, Diabetes & Metabolism

ORLANDO, FL

 $35,485
JAMES FINDLING

Endocrinology, Diabetes & Metabolism

MENOMONEE FALLS, WI

 $31,486
TY CARROLL

Endocrinology, Diabetes & Metabolism

MENOMONEE FALLS, WI

 $28,499
KEVIN YUEN

Endocrinology, Diabetes & Metabolism

SEATTLE, WA

 $27,553
JOHN PARKER

Endocrinology, Diabetes & Metabolism

WILMINGTON, NC

 $21,878

Top Teaching Hospitals Receiving Payments From this Company

Totals listed account for all payments from August 2013 to December 2016.

HOSPITAL PAYMENTS
HOSPITAL OF THE UNIV OF PENNA

PHILA, PA

 $10,000
UNIVERSITY OF LOUISVILLE HOSPITAL

LOUISVILLE, KY

 $5,000
UNIV OF MI HOSPITALS & HLTH CTRS

ANN ARBOR, MI

 $5,000
CEDARS-SINAI MEDICAL CENTER

LOS ANGELES, CA

 $4,550
UNIV OF MISSOURI HEALTH CARE

COLUMBIA, MO

 $3,183
LANGLEY PORTER PSYCHIATRIC HOSPTIAL

SAN FRANCISCO, CA

 $3,000
NATIONAL JEWISH HEALTH

DENVER, CO

 $2,500
TEMPLE UNIVERSITY HOSPITAL

PHILADELPHIA, PA

 $2,000
THE MOUNT SINAI HOSPITAL.

NEW YORK, NY

 $2,000
ADVOCATE LUTHERAN GENERAL HOSPITAL

PARK RIDGE, IL

 $1,700

 

See if your doctor is making money from this drug here:
https://projects.propublica.org/docdollars/company/corcept-therapeutics

⁉️ Can You Help? Adderall and Cushings

MaryO Can You Help?, What do you think? , , , , , , , , ,

Recently posted on the message boards at http://cushings.invisionzone.com/topic/54332-adderall-and-cushings/

I was recently diagnosed by the NIH with Cushings and Adrenal hyperplasia due to a tumor in my adrenals.  I have taken Adderall for a few years now for what I thought was ADD.  Can Adderall increase cortisol levels since it is a stimulant?

If you will respond here or in the comments, I will post your answer to the boards.

⁉️ Cushing’s Survey

MaryO What do you think? , , ,

Cushie Jessica G writes:
​​​​​​​
“I am writing a research paper for my final exam. My thesis is that Cushing’s syndrome/disease is not rare, but frequently missed or under-diagnosed.

I have created 2 separate surveys as part of my research. One survey is for people who are undiagnosed but currently seeking diagnosis, the other is for people who have been diagnosed and treated.

Please take these quick surveys. I’m hoping that by incorporating these statistics into my paper I can make a valid argument and help raise awareness for all of us.”

— survey for undiagnosed people
https://www.surveymonkey.com/r/ZL77M97

— survey for diagnosed people
https://www.surveymonkey.com/r/6PQ7J87