Welcome to the

Alport Syndrome HCP Benchmark Survey

Thank you for your time! You are invited to participate in a research study conducted by HCB Health in partnership with the National Kidney Foundation. The purpose of this research is to learn primarily about the HCP experience with Alport syndrome when considering the following categories: living with Alport syndrome, the diagnostic journey, and treatment.

As a participant, you will be asked a series of questions pertaining to the categories above. The survey should take between 15 and 30 minutes to complete. Your opinions regarding your experience with these categories will help us better understand the patient experience with Alport syndrome; there are no right or wrong answers. Responses to each question will be needed to complete the survey.

Additionally, the first 350 respondents to complete the survey will receive a $100 gift card.

Participation in this research study is voluntary. You may choose not to participate, and you may stop your participation at any time. Know that all provided responses are strictly confidential and no personal information will be associated with your answers. Your identity will not be revealed to any individuals nor will it be used in correlation to your responses. All collected information will be assessed holistically and in the aggregate to further the overall understanding of the HCP experience.

If you have questions or additional concerns regarding the content in this survey, please reach out to Abigail Klein at [email protected].

Please click "AGREE" below if you consent to participating in this research. If not, please click "DECLINE" and you will exit the survey.

For verification purposes, please enter your NPI number:*

(This information will remain confidential and not be tied to your responses beyond this point.)

What is your familiarity with Alport syndrome?*

None

Iâ€™ve studied it, but have no experience with Alport syndrome patients.

I havenâ€™t studied it, but have experience with Alport syndrome patients.

Iâ€™ve studied it and know a colleague who has Alport syndrome patients, but have not personally treated/managed an Alport syndrome patient.

Iâ€™ve studied it and have personally treated/managed an Alport syndrome patient.

Thank you for your interest in the Alport syndrome benchmark survey. Unfortunately due to your preliminary responses, you do not qualify for the survey at this time. Thank you again for your willingness to participate and we hope you have a great rest of your day.

What is your occupation?*

Adult nephrologist

Pediatric nephrologist

Physician assistant

Nurse practitioner

Registered nurse

Other

What is your occupation? Other*

How many years have you been in practice?*

Less than 2 years

2-10 years

11-20 years

21-30 years

31-40 years

40+ years

What type of setting do you practice in?*

Private practice (solo)

Private group practice

Academic medical center

Community hospital

VA

Other

Other*

How many Alport syndrome patients do you currently manage?*

0

1-5

6-10

11-20

21+

How many Alport syndrome patients have you seen in your career?*

0-5

6-10

11-20

21-30

31-40

41-50

51-60

61+

Part A

At what age are your patients generally being referred to you?*

0-5 years

6-12 years

12-17 years

18-25 years

26-35 years

36-45 years

46+ years

I am not an HCP that receives referrals

Part B

Who are they receiving a referral from?*

Primary Care Physician

Internist/Hospitalist

OB/GYN

Nephrologist

Audiologist

Optometrist

Ophthalmologist

Psychologist

Other

Other*

At what age do you typically diagnose Alport syndrome patients?*

0-5 years

6-12 years

12-17 years

18-25 years

26-35 years

36-45 years

46+ years

On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how much of a patientâ€™s day to day do you believe is being impacted by Alport syndrome?*

1

2

3

4

5

What specific impact do you believe Alport syndrome has on a patient's day-to-day life?*

How have you seen Alport syndrome impact your patientsâ€™ relationships with family or loved ones?*

Select all that apply

Which emotions do you believe your Alport syndrome patients wrestle with often?*

Scared

Anxious

Startled

Confused

Amazed

Excited

Interested

Proud

Accepted

Peaceful

Optimistic

Depressed

Guilty

Part A: Select all that apply

What information do you consider important for newly diagnosed Alport syndrome patients to understand in order to manage living with Alport syndrome?*

Disease severity

Disease progression

Genetic inheritance of disease

Signs/Symptoms

Management of the disorder

Other

Other*

Part B

Out of the important items you selected, please rank them in order of importance.*

What is your go-to resource(s) for information on rare disease information in nephrology?*

Go-to resource(s) 2*

Go-to resource(s) 3*

Part A

Are you aware of resources or materials to support patients and help in managing life with Alport syndrome?*

Yes

No

Other*

Part B

Have you or would you recommend any of these to your patients?*

Yes, I have recommended resource materials.

No, I havenâ€™t, but I would if I had the opportunity.

No, I havenâ€™t, and would not recommend materials to help manage life with Alport syndrome.

Part C

What information is currently missing from existing resource materials (print, digital, video, EHR)?*

Specifically for patient education of Alport syndrome, at what age do you think a patient is ready to learn about his/her condition through patient education materials?*

12-14â€“year-olds can understand Alport syndrome information.

15-17â€“year-olds can understand Alport syndrome information.

Not needed until a patient is an adult (18 years or older).

Have you ever referred a patient to any advocacy groups or organizations for additional resources and support?*

Yes

No

Other*

Have you ever referred patients to the Alport Syndrome Foundation (ASF) for additional information and support?*

Yes

No, I am aware of ASF, but have not referred patients to it.

No, I am not aware of the ASF or their educational resources.

Unsure

If so, how often do you refer your Alport syndrome patients to ASF?*

Always

Sometimes

Rarely

Never

How do you think Alport syndrome impacts patients between ages 14-18?*

How do you think Alport syndrome impacts patients between ages 19-29?*

How do you think Alport syndrome impacts patients 30+ years of age?*

What do you believe may be the emotional impact of life with Alport syndrome on your patients?*

Select All That Apply

How do you provide guidance/council for your patients as they consider future plans for living with Alport syndrome?*

I provide tangible resources.

I provide contact information to advocacy groups and support groups.

I provide clinical trial information.

I provide access to genetic testing.

I provide referrals to other specialties for additional support.

I do not provide guidance/council to my patients.

Other

Other*

Part A

In a single word, how would you describe Alport syndrome?*

Part B

Explain why you chose that word.*

What do you consider to be the average length of time from first symptom onset/presentation to actual diagnosis of Alport syndrome?*

0-6 months

7-11 months

1-2 years

3-5 years

6-9 years

10-15 years

16+ years

Select All That Apply

Prior to diagnosis, what other types of CKD would you consider before the official Alport syndrome confirmation?*

IgA

ADPKD

FSGS

Diabetic CKD

Membranous nephropathy

Other

Other*

When Alport syndrome was first considered, did you make the initial diagnosis or did you refer to a nephrologist specializing in rare diseases?*

I made the initial diagnosis.

I referred to a nephrologist specializing in rare diseases.

What emotions do your patients experience pre-diagnosis?*

What emotions do your patients experience post-diagnosis?*

What emotions do you find that caregivers experience pre-diagnosis?*

What emotions do you find that caregivers experience post-diagnosis?*

Part A

Can you identify the various inheritance patterns (subtypes) of Alport syndrome?*

Yes

No

Part B

Please explain the differences.*

Part C

As part of educating the patient, do you typically share this information with your patients?*

Yes

No

Part D

Why/Why not?*

In comparison to other forms of CKD, how quickly do Alport syndrome patients typically progress to ESKD?*

0-3 years

4-7 years

8-12 years

13-17 years

18+ years

Part A

What differences exist between males and females who present with Alport syndrome?*

Part B

What differences exist between males and females in the diagnosis of Alport syndrome?*

Part C

What differences exist between males and females in the progression of Alport syndrome?*

Once Alport syndrome is suspected, how do you confirm diagnosis?*

Biopsy

Genetic test

Biopsy & genetic test

Other

Other*

What is the gold standard for diagnosing Alport syndrome?*

Biopsy

Genetic test

Biopsy & genetic test

Other

Other*

On a scale of 1-5, with 1 being not satisfied at all and 5 being completely satisfied, how satisfied are you with the available diagnostic tests?*

1
Not satisfied

2

3
Neutral

4

5
Completely satisfied

Explain your selection.*

Part A

Do you know of a genetic test that can confirm Alport syndrome?*

Yes

No

If so, what is the test called?*

Part B

Would you be willing to provide a genetic test to your patients as a noninvasive confirmatory diagnosis option? Why or why not?*

In your opinion, what are the limitations or barriers of genetic testing?*

Part A

If a patient in your practice had confirmed Alport syndrome, how likely would you be to recommend genetic testing for their immediate family members on a scale of 1-5?*

1
I would not recommend a genetic test for their immediate family members.

2

3
Unsure

4

5
I would recommend a genetic test for their immediate family members.

Part B

When would you potentially recommend the genetic test to their family members?*

I would not recommend a genetic test to family members.

I would recommend a genetic test upon learning the results.

I would recommend a genetic test upon further kidney decline.

I would recommend a genetic test within 1 year.

I would recommend a genetic test within 2-5 years.

I would recommend a genetic test after 5 years.

Part C

Are you performing this counseling or someone else in your practice?*

I am performing the counseling.

Someone else in my practice.

Who else is providing the counseling?*

Does confirming a patientsâ€™ genetic subtype impact your approach and clinical management of Alport syndrome? If so, how?*

Part A

Understanding that Alport syndrome is caused by a COL4A mutation, what do you think leads to the mechanism of progression?*

Part B

Does understanding the mechanism of progression of Alport syndrome affect your treatment approach? If so, how?*

Part A: Select all that apply

Once youâ€™ve diagnosed, how do you treat Alport syndrome?*

ACEs

ARBs

SGLT2

Other

Other*

Part B

What do you monitor? And how often?*

Part A

On a scale of 1-5, with 1 being extremely unsatisfied and 5 being extremely satisfied, how satisfied are you with the treatments available for Alport syndrome?*

1
Extremely Unsatisfied

2

3
Neutral

4

5
Extremely Satisfied

Part B

What does success look like with current treatment options?*

Does your treatment approach differ for male vs female patients? If so, how?*

In your opinion, what is your main barometer to track progression of ESKD?*

Decline in eGFR

Progression of hematuria

Progression of proteinuria

Other

Other*

If you could design a therapy with an Alport syndromeâ€“specific indication, what would be your dream MOA or dream efficacy?*

When managing CKD, whom do you look to, physician-wise, for advice or insight? (List up to 3 peers in order of preference, 1 = most preferred.)*

Chronic whom do you look to, physician-wise 2*

Chronic whom do you look to, physician-wise 3*

When managing rare kidney diseases, such as Alport syndrome, whom do you look to, physician-wise, for advice or insight? (List up to 3 peers in order of preference, 1 = most preferred.)*

Rare whom do you look to, physician-wise 2*

Rare whom do you look to, physician-wise 3*

What is your ethnicity?*

Caucasian

African American

Latino or Hispanic

Asian

Native American

Native Hawaiian or Pacific Islander

Other/Unknown

Prefer not to say

What is the highest level of education youâ€™ve completed to date?*

Some high school

High school

Associateâ€™s degree

Bachelor's degree

Master's degree

PhD or higher

Trade school

Prefer not to say

Which range best represents your annual household income?*

Less than $25,000

$25,001 - $50,000

$50,001 - $100,000

$100,001 - $200,000

More than $200,000

Prefer not to say

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