Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Andy Battaglia on August 17, 2015, 05:38:47 PM
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Bluebird Bio is running trials of gene therapy for thalassemia and wants to help patients have a good experience during their participation in trials. Bluebird has asked me to pose this question, so they can get feedback from patients so that patients participating in trials can have an excellent experience.
“If you’ve had a long hospital stay in the past, what information, tips or resources (e.g. listings of restaurants, and other conveniences) would have been helpful to you and your family?”
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Andy,
is it for the patient who is going for trials?
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Information regarding accommodations for family accompanying the participant would be helpful.
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As a Minor without transfusions I would have a question that is partially for Bluebird and also for Andy or Majors/Minors who had transfusions:
- Does the "paleness" disappear after a transfusion and while it "lasts"?
- Did it disappear in patients receiving gene therapy? Did the treatment cause other positive changes in their appearance, e.g. less "yellowish" etc.?
Sorry if those questions are inappropriate in any way or in the wrong topic!
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Sorry, didn't come across this topic before.
I would be interested to know (Activities for kids, family accomodations (if travelling), out of pocket expenses, transportation facilities around).