Cushing’s Syndrome Patient Advisory Board: Patient Qualifier
Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.
Q1: Are you a U.S. Citizen and at least 18-years or older?
Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?
Q3: Did your doctor find a tumor on your Pituitary Gland?
Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:
- ISTURISA® (osilodrostat)
- KORLYM® (mifepristone)
- SIGNIFOR® (pasireotide), OR SIGNIFOR® -LAR (pasireotide).
Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≥3-months.
If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.
- Email: firstname.lastname@example.org
- Mobile: 936.232.5940
Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.
Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.
He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.
Dr. Friedman prescribes various thyroid hormone preparations to his patients with hypothyroidism. This includes natural desiccated thyroid (NDT) of which two preparations are WP Thyroid and Nature-Throid, both made by RLC Labs. On August 25, 2020, RLC Labs announced a voluntary, consumer-level recall of all lots of Nature-Throid and WP Thyroid tablets because somel ots contain less than the required 90% of the active ingredient as determined by the FDA. The RLC spokesperson said to Dr. Friedman that one lot of WP Thyroid and 5 lots of Nature-Throid contained between 87% and 90% of the labeled amount of levothyroxine (T4) or liothyronine (T3). The recall did not disclose which of the lots were affected and all lots are recalled, not just the affected lots. According to the recall, if a patient receives a sub-potent tablet, hypothyroid symptoms may not be controlled. To date, there have been no reports of adverse events related to this recall. Patients who have had an adverse event should contact RLC Labs.
RLC Labs advised that patients should talk to their healthcare professional before they stop taking their Nature-Throid and WP Thyroid medicine. Consumers with questions about the recall can email RLC at email@example.com or RLC Customer Service (877) 797-7997. Patients may return unexpired Nature-Throid and WP Thyroid tablets to their pharmacy who are legally required to refund the cost of the tablets. Currently no lots of Nature-Throid and WP Thyroid tablets are commercially available, so a replacement with the same product is not an option. It is unknown how long it will be before Nature-Throid and WP Thyroid become commercially available.
Dr. Friedman has several comments about this recall. This is the second recall of desiccated thyroid as some lots of NP thyroid were recalled in May 2020. Dr. Friedman sees this as unfortunate, but still believes desiccated thyroid is a good option for patients with hypothyroidism. Secondly, the “subpotent” Nature-Throid and WP Thyroid pills are only slightly less potent than stated in that only a few lots are between 87% and 90% of the T4 and T3 levels. For most patients, they will not have symptoms from these subpotent pills and if they are taking a lot that is subpotent, the dose can be adjusted based on laboratory levels at your next appointment with Dr. Friedman.
According to Dr. Friedman, patients taking Nature-Throid and WP Thyroid have three options: 1) they can continue taking Nature-Throid and WP Thyroid knowing they may have a subpotent lot and knowing that they may not be able to get a refill at least temporarily. 2) patients can be switched to Armour thyroid, NP thyroid or have a compounding pharmacy compound the equivalent dose using USP grade porcine powder. Please let Dr. Friedman’s office know if you would like to go on a different desiccated thyroid product (and which one) and what pharmacy you would like to use, 3) Dr. Friedman has a small supply of desiccated thyroid that is available at his clinic for those in Los Angeles on the last Tuesday night of each month. He will not be able to mail desiccated thyroid. Please contact his office about this option.
Patients do not need to contact Dr. Friedman, but if you have any questions or need to schedule an appointment with Dr. Friedman, please email us at firstname.lastname@example.org or schedule an appointment on his website at goodhormonehealth.com.
Thanks for being a member of Rare Patient Voice, LLC. We have an opportunity for you to take part in a Cushing Syndrome interview (NEON_4470) for Patients. Our project number for this study is NEON_4470.
- Telephone interview
- Interview is 60-minutes long
- One Hundred Dollar Reward
- Looking for Patients diagnosed with Endogenous Cushing Syndrome
Things to Note:
- Patient study only, Caregivers please pass the link along
- Unique links, please do not pass along for 2nd use
- Want to share this opportunity? Let us know and we can provide a new link
- Please use a laptop/computer ONLY. No smartphones or tablets – Preliminary questions are Mobile Friendly!
- Save this email to reference if you have any questions about the study!
- If you have any problems, email email@example.com and reference the project number. If you hit reply, you will get an auto do-not-reply email.
If you are interested in this study, please click the link below to answer a few questions to see if you qualify.
Study Link: Link
- OR if the Study Hyperlink is not clickable above, please copy/paste this URL below.
Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.
Not Interested in this study? (Click link below so we do not send you any reminders for this study)
Study Reminder Opt Out Link: Link
We truly appreciate the time you set aside to interact with our company and don’t take it for granted. Receive a $5 gift card for referring others who may want to participate in this or future studies. Invite them to join Rare Patient Voice: https://www.rarepatientvoice.com/sign-up. They, too, receive a gift card.
Rare Patient Voice
Helping Patients with Rare Diseases Voice Their Opinions
Phone: + 1 609-462-5519
Sherry A added her helpful doctor, Matthew Gorris.
|How would you rate your Helpful Doctor?||5/5|
|Your Doctor’s Name||Dr. Matthew Gorris|
|Your Doctor’s Address||Medical Center Boulevard
City: Winston Salem
State / Province: NC
Postal / Zip Code: 27157
|Your Doctor’s Phone Number||(336) 713-7251|
|What are your Doctor’s Specialties?||Endocrinologist|
|Hospital Affiliation||Wake Forest Baptist Medical Center|
|Comments||Excellent Doctor, Takes his time, actively listens to his patients concerns and addresses questions in an easy to understand manner.|