U.S. Study Looking for Patients to Respond to a Survey. U.S. Residents Only

The questionnaire is also attached as a word document. Only US patients are eligible to participate. Participants will receive payment for interviews.


HealthEd, a patient education agency, is conducting research to help us create educational materials for people living with Thalassemia.

We are looking for people with Thalassemia to participate in a survey and consider working with us on future projects.

HealthEd is looking for people with Thalassemia who are
- Treated with transfusions
- Over the age of 18 (or is a parent taking the survey on behalf of a child with Thalassemia)
- Live in the United States

What would you need to do?
- Complete the survey questions and post your responses on the blog or email your responses to Anne Martin a.martin@healthed.com
- Consider being involved in future projects and sharing your contact information with HealthEd
* HealthEd provides payment for interviews and reviews of health education materials
Who are we? 
HealthEd is a patient education agency located in Clark, New Jersey. We create patient education materials for many disease states and conditions on behalf of pharmaceutical companies and advocacy organizations. Visit our website to learn more: www.healthed.com

If you have any questions - please email Anne Martin a.martin@healthed.com.


Survey

1. What type of Thalassemia to you have?

2. How old are you?

3. How old where you when you were diagnosed with Thalassemia?

4. In your own words, how to you describe Thalassemia?

5. What are the most challenging things about living with Thalassemia?

6. How do your family and friends help you manage Thalassemia?

7. What treatments do you receive?

8. How often do you receive transfusions?

9. Will you describe what it's like to get a transfusion - what is most difficult, what helps you during your treatment?

10. Do you know about iron overload?
- If yes, when did you learn about this issue?
- If no, skip to question #19

11. What questions did you have when you first learned about iron overload?

12. How would you describe iron overload to others?

13. Do you receive treatment for iron overload? If yes, what is the treatment?

- What made your doctor decide when you needed to start iron overload treatment?

14. How often does your doctor test your iron levels?

15. Do you think iron overload is an important health issue? (Not important, somewhat important, or very important)

16. Do you think there is enough information about iron overload online?

17. How often do you go online to learn or talk about Thalassemia?

18. How much time do you spend online for other reasons?

19. What are your hobbies?

20. What are your favorite websites (not related to Thalassemia)?


Thank you!

The wrong file (which is actually a file of great importance to all thalassemics) was attached to the previous post. The correct file is now attached.

I want to address an issue brought up in an email response to this topic. This survey is not being run by Thalassemia Patients and Friends, we are only publicizing it for HealthEd, and as a result have no control over the fact that it is open to US residents only. Nor do we have any way to know which members are US residents, so there is no way to filter out everyone else. I'm sorry if being notified of a study disturbs anyone, but I will point out that previous studies we have publicized which also were US residents only, actually were of benefit to ALL thal patients. One in particular was done on the behalf of Novartis as it prepared to launch Exjade, which has been a big advancement for thalassemia patients in terms of having chelation choices. Patient responses are very important to companies as they develop new drugs and treatments. I'm sure everyone can understand that hearing directly from patients about their real needs is better than having the companies just assume they know what patients are looking for.  Even if you can't participate, please be aware that the information gathered by these surveys can eventually benefit ALL patients.

Thank you for your consideration.