2025 CSRF Membership Form

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* 1. Please share the following:

First Name

Last Name

E-Mail Address

Mailing Address

Mailing City / Town

Mailing State / Country

Zip / Postal Code

Phone Number

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* 2. Date of Birth?

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* 3. How did you hear about CSRF?

Internet search

Doctor referral

Fellow patient

Other (please specify)

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* 4. Please indicate which role BEST describes you.

Patient

Caregiver

Parent

Other family

Friend

Doctor

Other (please specify)

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* 5. If you are a patient, or the parent of a pediatric patient, please share the source of your or your child's first diagnosis with Cushing's.

I am not the patient or the parent, I am a different relation to the Cushing's community.

Pituitary

Adrenal

Ectopic

MACS - mild autonomous cortisol secretion - adrenal

Secondary to genetic disease (ex. bilateral macronodular adrenal hyperplasia, Carney Complex)

Exogenous (due to use of steroid medications)

Non-Neoplastic Hypercortisolemia (endogenous but not from a tumor)

Unknown source

Still in the process of diagnosis

Suspicion only, no testing yet

Other (please specify)

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* 6. Date of first diagnosis, if applicable

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* 7. Date of first surgery, if applicable

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* 8. Date of recurrence, if applicable

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* 9. Months/years of remission, if applicable

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* 10. Have you ever taken a medication to block or lower your cortisol? This does not include hydrocortisone, prednisone, or other cortisol products that replace cortisol after a successful surgery or treatment.

Yes, in the past, but no longer

Yes, currently taking

Currently being prescribed

Offered, but declined

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* 11. If yes on above question, please indicate which medication(s) apply.

Isturisa (osilodrostat)

Korlym (mifepristone)

Lysodren (mitotane)

Metopirone (metyrapone)

Recorlev (levoketoconazole)

Signifor (pasireotide)

cabergoline (off-label in US, generic)

etomidate (off-label in US, generic)

ketoconazole (off-label in US, approved in EU)

mifepristone (generic)

Other (please specify)

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* 12. Clinical Trials: check all that are true for you.

I participated in a clinical trial in the past, but not now

I am currently enrolled in a clinical trial

I have been offered a trial, but declined

I have never been offered a clinical trial, but would consider participating in one

I know little to nothing about clinical trials

Other (please specify)

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* 13. Would you recommend your endocrinologist? We know it can go all sorts of ways with our care team, but if you had a doc who got it right, we'd love to know about it, especially if you would recommend them to others.

Yes

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* 14. If yes, please provide all the details you have about the endocrinologist. We can likely find them if you don't have all the information, but whatever you do have will be mighty helpful to us!

First Name

Last Name

Title (endo, neuroendo, pediatric endo, etc.)

Name of Hospital or Facility

City, State/County where you saw them

A good phone number for them?

Do they have a public email address you could share?

Do you know if they are retired?

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* 15. Would you recommend your surgeon? It's the same with our surgeons, some are so good and others we would not recommend. If you had a surgeon who got it right, we'd love to know about it, especially if you would recommend them to others.

Yes

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* 16. If yes, please provide all the details you have about the surgeon. We can likely find them if you don't have all the information, but whatever you do have will be mighty helpful to us!

First Name

Last Name

Title (adrenal surgeon, neurosurgeon, pediatric surgeon, etc.)

Name of Hospital or Facility

City, State/County where you saw them

A good phone number for them?

Do they have a public email address you could share?

Do you know if they are retired?

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* 17. Comments or feedback? There could be a couple week delay before we can see and answer any questions, so please email us now at leslie@csrf.net if you have a time-sensitive question or issue. Thank you!

Thank you for joining CSRF! We hope you will take a look around at our website csrf.net, check out the patient stories, sign up for monthly zoom support calls, read some back issues of our print and e-newsletters, and maybe RSVP for a dinner or event if we're coming to a town near you.

We will be in touch shortly but please do not ever hesitate to reach out! leslie@csrf.net