If you have been diagnosed with sickle cell disease, how old were you when you received your diagnosis?

How much time do you spend per week researching, discussing, participating in social media, etc., related to SCD?

Who is the person who has helped you most through your SCD journey?

Has SCD ever interfered with your work life?

Has SCD ever interfered in your personal relationships?

Do you feel that managing your SCD experience has made you a stronger person?

Do you think others outside of your close friends and family understand the challenges you face in your SCD journey?

Have you ever felt guilty about some aspect of having SCD?

Do you think you, or someone you know with SCD, has been bullied because of it?

On average, how many cups (8oz) of coffee do you drink each day?

On average, how many cups (8oz) of plain water do you drink each day?

On average, how many hours of exercise do you get each week (yes, walking counts!)?

What is the biggest challenge you or your loved one faces at school with SCD?

Do you or your loved one with SCD get a flu shot every year?

How long has it been since you or your loved one with SCD experienced an SCD-related hospitalization?

Have you met an emergency department doctor or nurse that really treated you well?

What are your considerations when planning to attend an SCD conference?

What blog topic do you want to read about?

What do people with SCD need most during this period of response to COVID-19?

Have you ever had trouble getting SCD medicine? If yes, what were the issues?

What items do you pack and have ready when you need to go to the ER? Please select all that apply.

What information do you think should be contained in a travel letter? Please select all that apply.

Do you trust the medical establishment as a whole?

Have you noticed any changes in how you have been treated as a patient in the hospital over the last few years?

How many other members of your immediate family have sickle cell disease?

How many members of your family, immediate and extended, have Sickle Cell Trait?

What is the average wait time for you when you go to the Emergency Department?

Have you noticed any changes in Emergency Department wait times over the last few years?

Do you have health insurance?

If you do not have health insurance what are the obstacles to obtaining it?

Is there a sickle cell provider in your geographic area?

How far to do you have to travel to obtain sickle cell care?

Have you had to delay treatment or medical appointments because of COVID19?

Have you or your loved one with SCD experienced memory loss as you get older?

Have you ever participated in a clinical trial?

Have you ever attempted to participate in a clinical trial but did not qualify

Would you consider participating in a clinical trial in the future if you met the criteria?

How happy are you with your level of medical care?

Are you able to care for yourself or do you require assistance of a caregiver?

Do you belong to any kind of support group for sickle cell disease?

Have you tried to help spread awareness of sickle cell disease?

How has telemedicine benefited you during COVID-19? Please select all that apply.

What symptoms push you to go to the ED during COVID-19? Please select all that apply.

How long has it been since you or your loved one with SCD experienced an SCD-related emergency department visit?

Are you seen at least once a year by a hematologist for SCD?

After transitioning from pediatric care, did you have difficulty finding an adult hematologist?

After transitioning from pediatric care, how long was it before your first visit with an adult hematologist (or adult physician)?

What are the top 3 things you wish you knew more about regarding sickle cell disease?

What are the top 3 things you wish your physician understood about your sickle cell disease?

Do you feel you are able to manage your sickle cell disease on a daily basis?

What is/was the hardest thing for your present/past employer to understand about your sickle cell disease?

What is the source you trust most for information about sickle cell disease?

In your opinion, how important is it to increase trait testing for sickle cell disease in your community?

In your opinion, who should advocate for trait testing in your community? (Please select all that apply)

What option would be most convenient to you and help you stay on track with your ongoing lab tests (eg, blood work, urinalysis)?

I get ALL my medications from:

What is the most important factor that influences your choice of pharmacy?

What is the most common question people without sickle cell disease ask you?

How is sickle cell disease talked about in your social circles?

What is the biggest challenge you face in your everyday life with sickle cell disease?

What is your biggest reason for not participating in or updating your information in a patient registry?

If you have (1) sickle cell disease, (2) hip replacement (total hip arthroplasty), and (3) you received dental care in the past 10 years: did your doctors tell you to take extra doses of antibiotics when you have dental care?* [*Current guidelines make no recommendation about whether antibiotics are needed in this situation.]