Advocacy
> Commentary
Patient Perspectives - commentary, proposals, and letters
Last update: 04/25/2008
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Guidance
for Patients and Caregivers | Urgency
& Unity |
Guidance for the NCI, the Industry, and the FDA
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Research Funding and Insurance | CT
scans
"The number one roadblock to our progress,
as defined at the think tank Dialogues on Cancer (2002),
is the lack of availability of high quality, highly characterized human specimens for translational research."
 Here
we provide patient perspectives on a variety of issues, and invite you
to E-mail
your comments, suggestions, and thoughts.
Current:
 | Open Letter to SEER:
Regarding capturing statistics for lymphoma subtypes PAL
seerltr.pdf
The SEER website has improved, but the utility of the
statistics for non-Hodgkin's lymphomas continue to suffer because
subtypes of the disease are not yet provided.
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| Biobank Best Practices: Patient Perspectives on the
issue of transfer of tissue for clinical use –
particularly for use in translational clinical research - PDF
"we may not have fully considered that requests for
transfer of tissue for clinical use could many times be in
harmony with the ultimate objective of achieving “personalized
medicine,” and the oft-stated principle of “partnering
with patients” – particularly when used to determine
eligibility for clinical trials."
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GUIDANCE:
For Patients and Caregivers:
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| Guidance: How to evaluate medical claims and data
Is this strong or weak information? Who is saying it?
It is reproducible? Is it free of bias? ...
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| What NOT To Say To A Cancer Survivor
Kathy
on WebMagic
Whether you are a newly diagnosed survivor or someone who loves
him or her, cancer rocks your world. We survivors have our own
issues to face, but those of you who care for us can help by
learning what not to say. We know you mean well, but please avoid
the following platitudes ....
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URGENCY & UNITY
GUIDANCE:
For the NCI, the Industry, and the FDA
To help accelerate the development and evaluation
of investigational therapies for lymphomas.
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Patient
attitudes towards trials: Report from our Lymphoma Patient Survey regarding
interest and participation in clinical
trials PDF
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Perspective: Adaptive Design Conference, July 2006, Washington
DC
Harmonizing Research
Goals with Meeting the Clinical Needs of the Participants
(slides
with narrative) PDF
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Perspective:
Harmonizing Research Goals with
Meeting the Clinical Needs
of the Participants - Apr 2006 - PDF
Presentation at Favrille Investigators Conference
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| Study Proposal: Combine molecular
profiling research with evaluating first-line use of
patient-specific idiotype cancer vaccines - studyprop.pdf
Key benefits: Acquire tissue once for multiple and complementary
purposes. Avoid ethical issue of acquiring tissue solely for basic
research. Quickly accrue patients for important clinical and
basic research without precluding optimal benefit from standard
treatment in future.
Discussion: Patient interest is an important starting point for
study design. Patients with untreated stable disease provide an
important untapped opportunity to investigate immune therapies,
while also increasing our understanding of the molecular biology
of the disease – which can provide the context for understanding
outcomes, and the variable clinical course of this incurable and
common disease.
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Perspective:
Advocating for Coordinated Immunotherapy Research
Eliminating Suffering and Death Due to Cancer by 2015: The Future of Cancer Research
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Let's not forget Immunotherapy! - A letter to Dr. Von Eschenbach
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"The patient is waiting" - patient perspectives
on aspects of toxicity and the need for innovation - PAL
 | an appeal for NBN in a
brochure format PDF
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| Question:
Radiofrequency
Ablation for lymphoma? PAL
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| Clinical
trial design and participation - We consult with
Patients, the FDA, Drug Sponsors, the NCI, investigators, and
community
physicians. Our goal is to increase participation in order
to accelerate progress against the disease. How else?
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| Advocacy?
Radiofrequency
Ablation for lymphoma? PAL
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| WHEN? Rationale for the National Biospecimen Network
NBN
There's an urgent need for new approaches and tools to accelerate
clinical research, such as the National Biospecimen Network.
One reason that even well-controlled studies fail to provide
definitive answers, it seems, is they are often unable to account
for underlying biological differences in the tumors and patients.
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FUNDING
AND INSURANCE COVERAGE
CT SCANS
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| Resources
& Research News |
| A User’s Manual For The IOM’s ‘Quality Chasm’ Report
- IOM
"the Quality Chasm report has attracted much less public attention than
"To Err Is Human" did, but for the serious student of health care quality and the serious leader of needed change, it signals the possible dawning of a new and persistent sense that the U.S. health care system’s performance in many dimensions, not just safety, is
unacceptably far from what it should be."
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