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Participants Needed for Survey about Starch Desferal (S-DFO)
Zaini:
Hello everyone,
Finally i got another reply from Biomedical Frontiers.:)
--- Quote --- Hi Zaini,
I'm sorry it's taken so long for me to get back to you. We are developing the Biomedical Frontiers website -- we hope it will be up soon. Here's where I could use your help. We are trying to describe what's it's like to have to go through iron chelation therapy every day. We really need to describe the physical and the emotional challenges of what it's like to be be required to use a therapy that lasts 8-12 hours a day. So, would you be willing to answer these questions in your own words...
1. What type of iron chelation therapy does your daughter presently use?
2. How long has she been using this treatment?
3. What are the frustrations and challenges of administering this treatment?
4. If your daughter is using or has used deferoxamine therapy, how long does it take to administer this?
5. How would your daughter's life be different if she did not have to go through the regimen of administering deferoxamine treatment.
6. How would your daughter benefit from a once a week, one hour chelation therapy that provided the same benefits as her current treatment?
Thank you, Zaini. I so appreciate your help. I will keep you informed of our progress.
Regards,
Janet Hallaway
Biomedical Frontiers
(Because of uncertainty about FDA rules concerning direct contact with patients by drug companies, Janet has asked that her email address be removed and that people wishing to contact her, do so through me...Andy)./quote]
Although Little Z is not on desferal right now,but we've been there and done that,so i know what a difference it can make,and i'd still love to have S-DFO and ferriprox,for me its the best combination.
Zaini.
--- End quote ---
Sharmin:
I have also contacted Janet and I am awaiting her response. I think that S-DFO and exjade would be a good combination for little A to continue on once this trial is complete. I hope it works out soon.
Sharmin
Manal:
I have received the same reply too
I encourge any one who has expierence with chelation to answer the above questions in an attempt to help them. You can pass them to me or you can email them directly. I am sure any of your answers will make a difference
manal
--- Quote ---Hi Manal,
I'm sorry it's taken so long for me to get back to you. We are developing the Biomedical Frontiers website -- we hope it will be up soon. Here's where I could use your help. We are trying to describe what's it's like to have to go through iron chelation therapy every day. We really need to describe the physical and the emotional challenges of what it's like to be be required to use a therapy that lasts 8-12 hours a day.
Would you know of any transfusion dependent patients who would be willing to answer these questions?
It would be very helpful to hear how patients describe their current treatment.
1. What type of iron chelation therapy do you use?
2. How long have you been using this treatment?
3. What are the frustrations and challenges of administering this treatment?
4. If you use or have used deferoxamine therapy though a pump, how long does it take to administer this?
5. How would you benefit from a once a week, one hour chelation therapy that provided the same benefits as your current treatment?
Manal, thank you for your help. I will keep you informed of our progress (and send you the link for the website when it's done).
--- End quote ---
Zaini:
So who else is ready to participate,you know the questions now,just mail the answers to me or Manal and we'll pass them on to Janet Hallaway,in my last email she said they'll respect patient's privacy too,so its not necessary to use your real name if you don't want too.
Zaini.
T @ r ! Q:
I just replied with answers :happyyes
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