Neurocrine CAH Expert Advisory Board Post-meeting Survey

Thank you for your participation in the Neurocrine CAH Expert Advisory Board Meeting. Based on the outcome of the meeting, we’ve revised our preferred terminology for use with healthcare providers and patients.
 
Please review the Lexicon terminology below and indicate if you agree or disagree with the term for the indicated audience (audience listed in brackets.) If you disagree with the use of the term, please explain your preferred term.
 
For the Scientific Platform statements, please review and leave any additional edits/comments you may have.
 
You will be compensated for up to 1-hour for the completion of this survey. We appreciate your participation and value your input.
 
CRINECERFONT IS NOT APPROVED FOR THE TREATMENT OF CLASSIC CONGENITAL ADRENAL HYPERPLASIA (CAH)
 
Confidential. Advisory Board Purposes Only; Not for Promotion. Do not Copy or Distribute. 
1.Instructions: For each term below, please indicate if you agree or disagree with the term for the indicated audience. If you disagree with the use of the term, please explain your preferred term.

Preferred Terminology on CAH Descriptors:(Required.)
Congenital adrenal hyperplasia (CAH) [HCP, patient]
Classic congenital adrenal hyperplasia (CAH) [HCP, patient]
2.Instructions: For each term below, please indicate if you agree or disagree with the term for the indicated audience. If you disagree with the use of the term, please explain your preferred term.

Preferred Terminology on Disease State Preferred Terms:(Required.)
Adrenal insufficiency [HCP, patient]
GC treatment [HCP, patient]
GC treatment of cortisol insufficiency [HCP, patient]
Glucocorticoid [HCP, patients]
Steroid [patients]
Adrenal androgen excess [HCP]
Excess testosterone-like hormones [patient]
Adrenal androgens [HCP, patient]
Adrenal androgen precursor [HCP]
Testosterone-like hormone [patient]
Adrenal androgen concentrations [HCP]
3.Instructions: For each term below, please indicate if you agree or disagree with the term for the indicated audience. If you disagree with the use of the term, please explain your preferred term.

Preferred Terminology on Alternative Terms for CAH Clinical Characteristic Descriptors From CARES:(Required.)
Virilization [HCP, patients]
Gender identified as [patients]
Female restorative surgery [patients]
Growth problems [patients]
Excessive hair growth [patients]
Hirsutism [HCP]
Menstrual irregularities [patients]
Please review the Scientific Platform Core Concepts and provide any comments or concerns in the comment box of Question 4.
4.Please review the statements from the ScP Core Concepts visual above and provide any comments or concerns:
Please review the CAH Disease State Statements and provide any comments or concerns in the comment box of Question 5.
5.Please review the statements from the CAH Disease State visual above and provide any comments or concerns:(Required.)
6.Instructions: For each term below, please indicate if you agree or disagree with the term for the indicated audience. If you disagree with the use of the term, please explain your preferred term.

Preferred Terminology for Treatment Management in the Lexicon:
Supraphysiological [HCP]
Higher/extra doses [patient]
Please review the CAH Burden and Unmet Need Statements and provide any comments or concerns in the comment box of Question 7.
7.Please review the statements from the CAH Burden and Unmet Need visual above and provide any comments or concerns:(Required.)
8.Instructions: For each term below, please indicate if you agree or disagree with the term for the indicated audience. If you disagree with the use of the term, please explain your preferred term.

Preferred Terminology for Crinecerfont Use and MOA:(Required.)
Adrenal androgen reduction [HCP]
Testosterone-like hormone reduction [patient]
Decrease in adrenal androgens [HCP, patients
Clinically meaningful reduction [HCP]: Relates to reducing the GC dose, the duration of time to finding the appropriate GC dose, reduction in dosing frequency
Uncouple [HCP]
Block and replace [patients]
First replace then treat [HCPs, patients]
Optimal [HCP, patient]
Adjunct/adjunctive [HCP, payer]
Add-on [patient]
9.Regarding our discussions about using “optimal” vs “ideal” to describe the new treatment paradigm, is there another term that you would use to describe the treatment rather than redefining optimal treatment?(Required.)
10.Can you think of a different term to use other than "adjunctive" or "add-on" to describe crinecerfont in relation to glucocorticoid therapy?(Required.)
11.Please enter your name.(Required.)