IBTA April 2010 E-News
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Dear Friend of the International Brain Tumour Community
Avastin
Avastin -
Brain Tumour Patients’ Charter of Rights: Sunday 18
April is the 4th European
Patients’ Rights Day and the IBTA will use the occasion to launch a Brain
Tumour Patients’ Charter of Rights which will have a universal application as
an aspirational document. The Charter will appear in
the IBTA’s forthcoming magazine (see later). We would
like to thank those who responded to our major survey directed to all our
contacts and the recent mini-survey about the Charter directed to our patient,
caregiver, support group and advocacy contacts. The Charter has undergone 13 iterations
as we strive to achieve the appropriate words applicable for most cultures.
Childhood cancer drugs for brain tumours: Pharmaceutical Research and
Manufacturers of America (PhRMA) member companies
currently have 234 new medicines in development for the special health care
needs of children, the industry group said
yesterday. IBTA E-News looked at the PhRMA list, which is available for download from its
website and those listed that appear to be directly relevant to brain tumours
are: irinotecan, cintredekin
bseudotox, and nimotuzumab.
Those being looked at generally for solid tumours are: cetuximab,
perifosine, taxotere, panitumumab and robatumumab. Not
a large number unfortunately.
IBTA magazine: The IBTA has been working on a magazine planned for
worldwide distribution in the brain tumour community. It will be printed on
26 April in the
It contains some fascinating information from people who are everyday names in
the brain tumour community. For example, who is the neuro
oncologist who tries to run at least two marathons each year? The one who
competes in ironman events? The neurosurgeon
who likes to ride fast on a motorbike? The Board member of a brain tumour charity
who repairs antique clock movements as a hobby? There are also
inspiring articles from patients who are getting on with their lives and other
articles of interest to practitioners, researchers, company managers, and
patients alike.
The IBTA intends to post a copy of the magazine to everyone on our
database for whom we have addresses and to send multiple copies to
the larger institutions, treatment centres and patient groups. You will soon
receive an email invitation to respond to a Zoomerang
survey from the IBTA seeking your postal (land) address and recommendations for
centres to which multiple copies could be sent. Please respond to ensure you
receive a copy of the magazine and that it reaches the audience for whom
it is intended.
Epidemiology meeting: IBTA Co-Director Kathy Oliver recently attended a
meeting of the Brain Tumor Epidemiology Consortium (BTEC) held at
Continuous dose-intensive TMZ: Dr James Perry (
Response Criteria for
High Grade Gliomas: In the April 10, 2010
issue of the Journal of Clinical Oncology members of the Response Assessment in
Neuro-Oncology (RANO) Working Group present their proposal for updated response
criteria in high-grade glioma but advise that it is a “work in progress”. The
Macdonald Criteria was previously used in clinical trials. Patient groups
should study these proposed criteria to evaluate how they might impact on
existing practices. One example includes eligibility for entry onto trials for
recurrent glioma. Currently patients are accepted if there is any worsening of their imaging studies,
the RANO group proposes “that patients should be required to have a 25%
increase in the sum of the products of perpendicular diameters of the
contrast-enhancing lesions, while on stable or increasing doses of corticosteroids ...”.
US brain tumor statistics: The Central Brain Tumor
Registry of the United States has published its latest report on primary
brain and CNS tumors diagnosed in the
Generic Temozolomide: On 31 March Teva
Thank you for your continuing support.
Denis Strangman (Chair and
Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org
Kathy Oliver (Co-Director)
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569
The International Brain Tumour Alliance is a not-for-profit,
limited liability company registered in
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