Sarcoma Advocacy and Education Survey

The Sarcoma Foundation of America (SFA) is committed to providing you with educational opportunities to enhance your knowledge about sarcoma and give you the tools to advocate on behalf of yourself and the sarcoma community.

SFA is interested in hearing from you regarding the types of learning activities and topics that you would be most interested in and that you believe would serve to improve your sarcoma knowledge and advocacy.

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* 1. I am a...

Sarcoma Patient in Current Treatment

Sarcoma Survivor

Caregiver

Medical Professional

Other

If you answered patient or survivor, please list your stubtype. If you are not a patient or survivor, please enter N/A.

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* 2. Rank these in the order of most importance to you.
I am interested in...

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* 3. Have you participated in an educational or fundraising event hosted by SFA? Please check all that apply.

Education Conference (in-person)

Education Webinar

Race to Cure Sarcoma event

N/A

Other (please specify)

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* 4. If you have not participated in an SFA event, please share why you have not.

Not aware of these offerings

Topics did not pertain to me

Did not fit my schedule

N/A

If other, please specify.

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* 5. The options listed below are examples of topics that may be useful in helping increase your knowledge about sarcoma and help you gain confidence to serve as a sarcoma advocate.

What topics are you most interested in learning about during an SFA education conference or webinar? Please select all that apply.

Immunology

Genomics

Clinical Trials

Sarcoma Research

Information About Current Treatments

Survivorship Issues

Psychosocial Issues

Young Adult Sarcoma Issues

Pediatric Sarcoma Issues

Role of the Caregiver

Critical Appraisal of Scientific Articles

Drug Development Process

FDA Drug Approval Process

Legislative-Policy Advocacy

Please share any specific topics or areas of interest that you would like to see offered in sarcoma education programming

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* 6. When do you prefer to participate in education programming (select all that apply)?

Morning hours (9am – 12pm eastern time zone)

Afternoon hours (after 12 pm eastern time zone)

Evening hours (5pm to 8pm eastern time zone)

Any time during the standard work day (Monday-Friday, 9 am to 5pm eastern time zone)

On weekends

Other (please specify)

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* 7. Many patients and caregivers are not familiar with sarcoma before diagnosis. What information would have been useful to have in the early days after a diagnosis?

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* 8. What kind of sarcoma advocacy activities are of interest to you? Please select all that apply.

Email/Phone Campaigns to Legislators

Attend an Action/Lobby Day in Washington, DC

Participate in Food and Drug Administration and National Cancer Institute Public Meetings

Participate in Drug Industry Patient Advisory Boards

Serve as a Patient Representative at Cancer Research Meetings/Conferences

Share Your Story as a Sarcoma Patient/Survivor/Caregiver

Letter Campaigns to Media

Other (please specify)

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* 9. If SFA were to build a team of patient/survivor/caregiver research advocates to work with industry, would you be interested in participating?

Yes

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* 10. What do you think are the SFA's most important roles in sarcoma (check up to 3)?

Finding new and better treatment options

Public policy and advocacy

Patient Education

Sarcoma Awareness

Leader in the sarcoma community

Other

Other (please specify).

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* 11. What challenges do you see in the world of sarcoma (outside of lack of therapies) that should be addressed by an organization like SFA? Please choose all that apply.

Lack of research funding

Limited awareness about the disease

Legislative and regulatory issues

Access to treatment/sarcoma specialists

Other (please specify)

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* 12. Where do you get information about sarcoma? If from a website or publication, please list the specific website or publication.

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* 13. What organizations in the sarcoma space do you follow?

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* 14. Please identify which, if any, social media outlets you would like for SFA to reach you through.

Facebook

Twitter

YouTube

Instagram

Other (please specify)

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* 15. Are you interested in participating in future research advocacy initiatives, surveys, patient focus groups, or other research projects?

Yes

If yes, please provide the email address where you can be contacted with future opportunities. This email address will not be shared with anyone outside of the Sarcoma Foundation of America.

Sarcoma Advocacy and Education Survey

Question Title

* 1. I am a...

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* 2. Rank these in the order of most importance to you. I am interested in...

Question Title

* 3. Have you participated in an educational or fundraising event hosted by SFA? Please check all that apply.

Question Title

* 4. If you have not participated in an SFA event, please share why you have not.

Question Title

Question Title

* 6. When do you prefer to participate in education programming (select all that apply)?

Question Title

* 7. Many patients and caregivers are not familiar with sarcoma before diagnosis. What information would have been useful to have in the early days after a diagnosis?

Question Title

* 8. What kind of sarcoma advocacy activities are of interest to you? Please select all that apply.

Question Title

* 9. If SFA were to build a team of patient/survivor/caregiver research advocates to work with industry, would you be interested in participating?

Question Title

* 10. What do you think are the SFA's most important roles in sarcoma (check up to 3)?

Question Title

* 11. What challenges do you see in the world of sarcoma (outside of lack of therapies) that should be addressed by an organization like SFA? Please choose all that apply.

Question Title

* 12. Where do you get information about sarcoma? If from a website or publication, please list the specific website or publication.

Question Title

* 13. What organizations in the sarcoma space do you follow?

Question Title

* 14. Please identify which, if any, social media outlets you would like for SFA to reach you through.

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* 15. Are you interested in participating in future research advocacy initiatives, surveys, patient focus groups, or other research projects?

* 2. Rank these in the order of most importance to you.
I am interested in...