Sickle Cell Disease Supplemental Survey

1
Please verify that you are human* This field is required.
2
Name* This field is required.
First Name
Last Name
3
Email* This field is required.Please be sure to enter the same email affiliated with your Consuli member account.
example@example.com
4
What is your current address?* This field is required.
Street Address
Street Address Line 2
City
State / Province
Postal / Zip Code
Please Select
Please Select
Afghanistan
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Montserrat
Morocco
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Namibia
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Nepal
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
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Nigeria
Niue
Norfolk Island
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Norway
Oman
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Palestine
Panama
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Paraguay
Peru
Philippines
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Poland
Portugal
Puerto Rico
Qatar
Republic of the Congo
Romania
Russia
Rwanda
Saint Barthelemy
Saint Helena
Saint Kitts and Nevis
Saint Lucia
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Samoa
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eSwatini
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Tonga
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Other
Country
5
Mobile Phone Number* This field is required.
Please enter a valid phone number.
6
Please indicate your sex.* This field is required.
Female
Male
7
Please indicate your ethnicity.* This field is required.
African American
Asian / Pacific Islander
Caucasian
Hispanic / Latino
Native American
Other
8
Birthdate* This field is required.
Date
Year
Month
Day
9
Do you have records from the past 2 years indicating that you have a confirmed diagnosis of HbSS or Sickle Beta Thalassemia?A Sickle cell disease diagnosis can be characterized by having HbSS or Sickle Beta Thalassemia (Sickle cell anemia).
YESNO
10
Do you have a confirmed diagnosis of Sickle Cell Disease?* This field is required.
YESNO
11
Do you have HbSS or Sickle Beta Thalassemia (Sickle Cell Anemia)?
YESNO
12
Do you have records from the past two years confirming your diagnosis?
YESNO
13
Are you in a stable condition?* This field is required.Stable condition means that you are not experiencing any significant complications and have not required in-patient hospitalization in the past 5 days due to the disease.
YESNO
14
Have you had at least 1 pain crisis that required a visit to a hospital or clinic in the past 12 months?* This field is required.A pain crisis is characterized by extreme pain that can last for several days.
YESNO
15
Are you currently taking Hydroxyurea (HU)?* This field is required.
YESNO
16
Have you received Voxelotor in the past 30 days or plan to receive it in the next 6 months?* This field is required.
YESNO
17
Have you received L-Glutamine in the past 8 weeks or plan to receive it in the next 6 months?* This field is required.
YESNO
18
Have you received Crizanlizumab in the past 12 weeks or plan to receive it in the next 6 months?* This field is required.
YESNO
19
Have you received a chronic transfusion / exchange transfusion in the past 16 weeks or plan to receive it in the next 6 months?* This field is required.
YESNO
20
Have you had any major surgery in the past 3 months or plan to have significant medical procedures in the upcoming 6 months?* This field is required.
YESNO
21
Have you ever received hematopoietic stem cell transplant or treatment with gene therapy?* This field is required.
YESNO
22
Have you been administered an investigational drug as part of a clinical trial in the past 30 days?* This field is required.
YESNO
23
Do you have a clinically significant history of any of the following diseases?
Cardiovascular Disease
Endocrine Disease
Aplastic Anemia
Autoimmune Hemolytic Anemia
Megaloblastic Anemia
Pernicious Anemia
Gastrointestinal Disease
Hematological Disease
Liver Disease
Neurological Disease
Pulmonary Disease
Psychiatric Disease
Stage 3 or 4 Cancers
Renal Disease
None Apply
Other
24
Have you experienced any recent and excess blood loss?* This field is required.
YESNO
25
Are you currently pregnant or breastfeeding?
Yes
No
Not Applicable
26
What city were you born in?* This field is required.This is a security question and will not be used to determine eligibility.
27
How did you hear about this?* This field is required.
Consuli
Sickle Cell Warriors
Sickle Cell Community Consortium
Sickle Cell Disease Association of America
Sickle Cell Disease Association, Michigan Chapter
Sickle Cell 101
Sickle Cell Disease Foundation
Sickle Cell Society
Sick Cells
As One Foundation
American Sickle Cell Anemia Association
Sickle Cell Unite
Sickle Cell Anemia Disease Facebook Group
Sickle Cell Reproductive Health Education Directive
Other
28
What platform did you hear about this on?* This field is required.
Clubhouse
Email
Facebook
Instagram
LinkedIn
Snapchat
Twitter
TikTok
YouTube
Other
29
Did you hear about us from a Patient Advocate? If so, please provide their name.
30
Thank you for your interest in participating in Sickle Cell Disease Research. As your response indicates you DO NOT have Sickle Cell Disease, this particular research is not a match for you. (NOTE, you can go back to change your answer if your previous answer was simply an error.) And, as a member of Consuli you can sit back and relax knowing we'll continue to monitor opportunities and alert you to future offers matched to you.Please provide any feedback below.
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