Form 2 Sickle Cell Trait

Attachment C - The Minimum Database Project (MDP) Sickle Cell Trait (SCT) Questionnaire

OMB Number: xxxx-xxxx

Expiration Date:

Public Burden Statement: An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number.  The OMB control number for this project is 0915-xxxx.  Public reporting burden for this collection of information is estimated to average 30 minutes per respondent annually, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information.  Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to HRSA Reports Clearance Officer, 5600 Fishers Lane, Room 14-33, Rockville, Maryland, 20857.

Sickle Cell Disease Newborn Screening Program (SCDNBSP)

Minimum Database Project (MDP)

Sickle Cell Trait (SCT) Questionnaire

Section A: SITE IDENTIFYING INFORMATION

Today’s Date (mm/dd/yyyy): |__|__| - |__|__| - 20|__|__|

Date of Client Visit/Interview (mm/dd/yyyy): |__|__| - |__|__| - 20|__|__|

Data Entry Personnel: ____________________________ Site ID: |__|__|__| State ID: |__|__|

Section B: CLIENT IDENTIFYING INFORMATION

Client ID: |__|__|__|__|__|

Section C: CLIENT INFORMATION

1. Who referred the client? (Please check one)

State Newborn Screening (NBS) Program Health Department (not a NBS Program)

Physician Self-Referral

Hospital Comprehensive Sickle Cell Center

Community-Based Organization Other: ­­­­­___________________________

Relative/ Family Member Don’t Know

2. What is the sex of the client? (Please check one) Male Female

3. Zip code of client |__|__|__|__|__|

Section D: FAMILY INFORMATION

4. How is the client related to the child with SCT identified by newborn screening? (Please check all that apply)
   
   

Mother Maternal Grandmother Maternal Grandfather

Father Paternal Grandmother Paternal Grandfather

Maternal Aunt Maternal Uncle Paternal Aunt

Paternal Uncle Maternal First Cousin Paternal First Cousin

Other

5. What is the confirmed sickle cell trait status of the child with SCT identified by newborn screening? (Please check one )
   
   Sickle Cell Trait (FAS) Hb C carrier (FAC) Hb E carrier (FAE)

Other Hb variant carrier (FA other)

6. Who provided the information about this child’s confirmatory diagnosis? (Please check one)

Client Child’s Parent Physician Lab Other: __________________

Section E: SERVICES CLIENT RECEIVED

7. What educational/ counseling services did the client receive? (Please check one)
   
   Face-to face education/counseling session Telephone education/counseling

None Not Applicable

8. What educational materials were provided to the client (Please check all that apply)
   
   Print materials Multimedia materials (e.g. DVD, video, on-line)
   
   Information about materials available on-line None Not Applicable

9. Did the client elect to be tested for SCT status? (Please check one)
   
   Yes No Don’t Know

10. If the client was tested, what were the results? (Please check one)

Sickle Cell Trait (AS) Hb C carrier (AC) Hb E carrier (AE)

Other Hb variant carrier (A other) Sickle Cell Disease (SS)

Other hemoglobinopathy _________________ Don’t Know

11. Have any of the client’s family members been tested for SCD/SCT or other hemoglobin trait? (Please check one)

Yes No Don’t Know

12. If no, give reason why (Add NA if no reason provided or ‘don’t know’ is checked):

___________________________________________________________________

Section F: CLIENT FAMILY COMMUNICATION
13. For Caregivers of clients under age 18	13. For Clients 18 years or older
The following questions pertain to clients under the age of 18 years and their caregivers. (Language categories provided below.) What is the primary spoken language in the client’s home? _________________________ If English is not your primary language do you require a translator for medical services/medical information? Yes No Not Applicable What, if any, is the secondary spoken language? ________________________ What language is the client/caregiver most comfortable reading? Client: . Don’t Know Not Applicable Caregiver: . What is highest level of education attained? Caregiver: . Don’t Know Not Applicable Continue to questions 14 and 15	The following questions pertain to the client 18 years of age or older. (Language categories provided below.) What is the primary spoken language in the client’s home? ____________________________ If English is not your primary language do you require a translator for medical services/medical information? Yes No Not Applicable What, if any, is the secondary spoken language? _________________________ What language are you most comfortable reading? _______________________________ What is the highest level of education you attained? _______________________________ Continue to questions 14 and 15
*Language categories: American Sign Language, Arabic, Chinese, Haitian Creole, Igbo, Korean, Somali, Spanish, Vietnamese, Yoruba or please provide any other language not listed.
Are you (your child) Hispanic or Latino? No, not Hispanic or Latino Yes, Hispanic or Latino What is your (your child’s) race? Mark (X) one or more boxes. White Black or African American American Indian or Alaska Native Asian Native Hawaiian or Pacific Islander