Noticias sobre el ensayo clínico - dr. Weeber
Enviado por María
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Noticias sobre el ensayo clínico - dr. Weeber 30-November-2011 18:39 |
Registrado: 12 años antes Mensajes: 143 |
Hola a todos
Ha llegado a la lista internacional la comunicación que a continuación copio sobre el ensayo clínico del Dr. Weeber.
Es un e-mail de una madre que ha estado en contacto con el Dr. Weeber y fundamentalmente lo que dice es que sigamos teniendo paciencia, que no escribamos ni llamemos a ningún sitio para no entorpecer el proceso, dice que está impresionado por lo unidos que estamos en la comunidad Angelman que nunca ha visto nada igual, que espera que el ensayo comience en Enero-Ferbero de 2012 y que la principal via de información será
[clinicaltrials.gov]
Que la FAST difundirá la información a todas las familias Angelman
Un abrazo para todos
María - Elena 27 (del +)
Madrid
[www.angel-man.com]
....................
Hi everyone,
I just called Dr. Weeber's lab in FL about visiting his lab and got an update on the clinical trial from one of Dr. Weeber's coworkers. They gave me permission to share this update with the group.
They told me they are still getting committee approvals for the trial, and that some committees only meet monthly, but that they hope to begin the trials in January or February of 2012, depending upon the speed of committee approvals. I asked if there was anything we could do to speed things up, such as writing letters or making phone calls, and he said that we should definitely not do any of that as it might hurt, not help, the process. His advice was to be patient.
As far as when and how we will hear about the trials, by FDA regulations they must put all of the information on clinicaltrials.gov, and that will be the main area of information. Also, since they are partially funded by FAST, no doubt FAST will spread the word, as will the parents of kids with AS.
Lastly, he told me that he is very impressed with how close-knit and dedicated the Angelman community is. He said he's never seen anything like it.
I told him we are very grateful for their work and wished them good luck in the clinical trials. Fingers crossed it comes quickly and is successful!
Lisa
mom to Sofia (2000) and Elena (2006, UBE3a)
Ha llegado a la lista internacional la comunicación que a continuación copio sobre el ensayo clínico del Dr. Weeber.
Es un e-mail de una madre que ha estado en contacto con el Dr. Weeber y fundamentalmente lo que dice es que sigamos teniendo paciencia, que no escribamos ni llamemos a ningún sitio para no entorpecer el proceso, dice que está impresionado por lo unidos que estamos en la comunidad Angelman que nunca ha visto nada igual, que espera que el ensayo comience en Enero-Ferbero de 2012 y que la principal via de información será
[clinicaltrials.gov]
Que la FAST difundirá la información a todas las familias Angelman
Un abrazo para todos
María - Elena 27 (del +)
Madrid
[www.angel-man.com]
....................
Hi everyone,
I just called Dr. Weeber's lab in FL about visiting his lab and got an update on the clinical trial from one of Dr. Weeber's coworkers. They gave me permission to share this update with the group.
They told me they are still getting committee approvals for the trial, and that some committees only meet monthly, but that they hope to begin the trials in January or February of 2012, depending upon the speed of committee approvals. I asked if there was anything we could do to speed things up, such as writing letters or making phone calls, and he said that we should definitely not do any of that as it might hurt, not help, the process. His advice was to be patient.
As far as when and how we will hear about the trials, by FDA regulations they must put all of the information on clinicaltrials.gov, and that will be the main area of information. Also, since they are partially funded by FAST, no doubt FAST will spread the word, as will the parents of kids with AS.
Lastly, he told me that he is very impressed with how close-knit and dedicated the Angelman community is. He said he's never seen anything like it.
I told him we are very grateful for their work and wished them good luck in the clinical trials. Fingers crossed it comes quickly and is successful!
Lisa
mom to Sofia (2000) and Elena (2006, UBE3a)
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Re: Noticias sobre el ensayo clínico - dr. Weeber 07-December-2011 15:17 |
Registrado: 12 años antes Mensajes: 61 |
Seria fantastico,ojala y sea verdad que en enero empiezan besitos a todos
Susana mama de Alba 5+
Guadalajara
Susana mama de Alba 5+
Guadalajara
Lo siento, sólo pueden enviar mensajes si está registrado.