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Phase 3 Luspatercept Trial

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CrazyPharm:

--- Quote from: Sharmin on November 08, 2015, 06:09:33 PM ---I have been waiting to enrol lil A in this trial for a long time.  I understand why it may be helpful to make this trial double blind, but for my son - who has an antibody which is active some times and not others - his participation in the study may skew the results of the study is conducted double blind.  His results can only be compared to himself - how he did in a given year with and without luspatercept. 

--- End quote ---

Hi Sharmin, how old is your son? I hope the trial is flexible and gets under way quickly.

Sharmin:
Hello CrazyPharm,

I agree, this medication, if it turns out to be what it seems will improve the quality of life of thals. 

My son is 17. I think participants are required to be 18+ years of age.

Canadian_Family:
Where are these trials conducted.

Sharmin,

Little A is now 17, amazing, how fast they grow. I remember talking about him on the forum when he was six (I believe). You certainly have done an excellent job.

Sharmin:
The trials will be conducted at multiple centres Canadian Family.  Oakland may be involved in the study.  I will keep you posted.  By next year all of our kids may have the option to be on this medication which may eliminate or greatly reduce their transfusion requirement. 

Time has passed by so quickly.  Lil A is preparing for university.  I hope lil miss A is doing well also.

Hoping for the best,

Sharmin

Canadian_Family:
Thanks for the information. Good Luck to young man, wishing him best of luck in everything.

Little Miss A is 12 now and in grade 7. She is a happy kid and interested in arts.

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