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Last updated: 02/06/2008
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Visitor Comments | Accomplishments |
Advocacy
Perspectives
LYMPHOMAtion blog
Patients
Against Lymphoma was founded in 2002 by patients and caregivers
directly affected by lymphomas, a kind of blood cancer that has
risen
4% annually between 1970 and 1990.
We
provide timely access to
evidence-based information on
lymphoma and its treatments;
and
engage the research community - providing
patient perspectives
on the direction of clinical research and the design of clinical trials.
We
also help patients and caregivers to more critically
evaluate the strengths and weaknesses of medical information;
and help scientists and drug sponsors to see clinical trial design from
the
patient perspective.
 Helping
patients to think like scientists;
and scientists like patients.
We
continuously update our web site in response to
visitor questions and patient needs, guided
by our scientific advisors and the published medical literature.
Day
or night, and without leaving home,
patients can find answers
in total
privacy
and without concern
about asking a “dumb” question.
What
sets us apart is our independence from health industry funding.
We have chosen this path in order to provide unbiased perspectives
on clinical research, drug approval, and access to the standard of care ...
ensuring that our advocacy efforts are driven only by patient needs.
We advocate for clinical trial design that harmonizes research goals (finding reliable answers)
with meeting the clinical needs of the participants (reasonable treatment decisions).
We recognize that each goal is of vital importance to making progress against lymphomas.
To
make better progress against the disease, more patients
must enroll in clinical trials. How else?
Slow enrollment delays new drug and protocol evaluations,
contributes to costs, and raises the financial risk of
developing new drugs ...
but most importantly, delays cost lives.
Because
there's an urgent need for safer and more effective therapies,
we provide a clinical trial locator service that makes it easy for
patients and
oncologists to locate
clinical trials, specific to lymphoma.
Importantly, we ask for no identifying information of persons who use this
service.
You cannot consider what you do not know to exist!
In
addition to the support content we develop, we link patients and medical
professionals to reputable sources of information on a comprehensive
list of topics, specific to lymphoma:
TOPIC SEARCH
AACR
| ASCO
| ASH
| ClinicalTrials.gov
| FDA
| JCO.org
| Medscape
| PubMed
...
ensures that visitors have the latest information from
the most credible sources.
Finally,
and with pride, we invite you to review
our accomplishments,
our website statistics,
and most importantly, what visitors say
about us.
Web Statistics - per-month visitor access is significant and
on the rise. Click to enlarge
Download "About Us" Brochure -
PDF
______________________________________________________
Patients
Against Lymphoma
founded in June of 2002
3774 Buckwampum
Road
Reigelsville, PA 18077
We are a 501(c)(3) non profit organization
Federal Tax ID # 51-0426732
Phone: 610-346-8419
Fax: 801-409-5736
Email: KarlS
______________________________________________________
Directors, Advisors, and Staff
~ Board of Directors
~
~ Scientific Advisors
~
~ Advisors and Staff ~
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Our
Mission
(detailed)
Focusing
on
what we can
do now to help win
the battle
against lymphoma.
Karl & Joanne Schwartz
Karl Schwartz, president and co-founder.
CV
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Providing timely access to:
 | Clinical trials
for lymphoma based on ready-to-use queries of ClinicalTrials.gov
according to:
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treatment type (with links to
related PubMed abstracts) |
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lymphoma subtype (with filters for
newly diagnosed or recurrent disease) |
|
settings (with filters for age,
grade, phase, stage, and refractory disease) |
|
state and country
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|
| Background information about
lymphomas, including:
| About lymphomas – simplified and
detailed explanations. |
| About transformation, diagnosis and
pathology, and prognostic indicators |
| About the lymphatic system;
background articles on biology and immunity. |
| Resource pages on subtypes of
lymphoma – includes subtype-specific queries of PubMed, ASCO,
and ClinicalTrials.gov
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Background information on incidence rates of
lymphoma, and known risk factors.
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Background information about standard and
investigational treatments, and complementary practices.
| Treatment of
refractory disease, and treatments for the elderly. |
| Caveats and
potential opportunities of using complementary practices. |
| Information on side
effects. |
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Treatment
types – includes treatment-specific queries of PubMed, ASCO, and ClinicalTrials.gov
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Research news and notices of special
events.
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| Resources to help patients locate
medical experts, cancer centers, and second opinions on pathology
evaluations.
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| Support resources on a variety of
topics:
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communicating with doctors |
| careers and cancer |
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drug payments, insurance and
financial support |
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immunization guides |
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palliative care |
|
ports |
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support groups . . .
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Advancing
and advocating for:
| Clinical testing of biotherapies
(such as immunotherapies) on patients with indolent lymphomas who do
not require therapy in order to take advantage of:
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Better immune competence |
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Less tumor burden |
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Less prior exposure to toxic treatments |
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Potential to improve quality of life |
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Potential to learn without precluding
use of standard treatments
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| Gene profiling technology in order to
identify clinical subtypes of lymphoma to help rationally select
treatments and more rapidly identify molecular drug targets. |
| Optimal care for all cancer patients as determined by up-to-date evidence-based
clinical data, unencumbered by insurance or regulatory policies. |
| Shared decision making – informed
patients in partnership with caring and knowledgeable physicians. |
| Translational research at the NCI –
applying new insights and tools to do more clinical research
to develop drugs with the potential to make a difference to patients
now. |
| Transparency
in the drug evaluation system.
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Leading in efforts to:
| Educate community physicians and patients about
the importance of participating in clinical trials. |
| Educate patients and caregivers about
how to
recognize possible bias and conflict of interest in scientific data, and
medical claims; and how to distinguish between weak and strong medical
information. |
| Encourage the
cooperation of all lymphoma and cancer organizations so that we may better achieve our common
goals and do effective advocacy work. |
| Improve access to the compassionate
use of appropriate investigational
therapies for patients in need who are not eligible to participate in clinical
trials. |
| Increase public awareness of lymphoma, including risk factors, symptoms, the
burden of the disease, and research opportunities.
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| Provide online peer-to-peer support
groups that provide opportunity for patients and caregivers to
encourage each other and exchange information.
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| Provide online research tools and
educational materials for all individuals who
support lymphoma patients. |
| Provide informed patient perspectives on
clinical trial design and FDA decisions, and to
vigorously represent the patient's
perspective in matters of concern. |
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Provide well-researched answers to
every visitor question in a timely
manner. |
We sincerely hope that you will participate in the process and make this
site your own by sending comments or suggestions,
asking questions or by making a tax-deductible
donation.
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Accomplishments
Support
Advocacy
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Support | Advocacy
Highlights:
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| Aug
2007: Traffic
Rank by Alexa
for lymphomation.org
:
146,583 in world!
Speed: Very Fast (99% of sites are slower)
Average Load Time: .2 seconds
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| Statistics for last 12
months, as of Aug 7, 2007:
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| Month |
Hits |
Files |
Cached |
Pageviews |
Sessions |
KB sent |
|
| August
2007 |
20,8356 |
176,034 |
17,787 |
53,632 |
19,719 |
2,353,305 |
| July
2007 |
1,075,532 |
914,998 |
86,114 |
291,836 |
103,707 |
10,824,344 |
| June
2007 |
1,049,159 |
888,689 |
86,369 |
279,635 |
104,691 |
1,0754,770 |
| May
2007 |
1,207,066 |
1,029,303 |
9,6292 |
307,110 |
109,121 |
12,164,446 |
| April
2007 |
1,176,913 |
1,00,5316 |
91,922 |
305,205 |
104,248 |
11,307,561 |
| March
2007 |
1,162,513 |
994,317 |
91,412 |
295,096 |
105,724 |
11,679,991 |
| February
2007 |
1,021,119 |
871,232 |
80,644 |
258,604 |
93,718 |
9,688,478 |
| January
2007 |
1,025,296 |
872,493 |
81,516 |
267,923 |
94,826 |
10,865,062 |
| December
2006 |
814,561 |
692,301 |
66,298 |
223,601 |
79,498 |
9,855,433 |
| November
2006 |
979,064 |
841,387 |
79,485 |
260,882 |
90,368 |
10,389,596 |
| October
2006 |
990,344 |
857,717 |
81,159 |
271,439 |
90,936 |
10,722,815 |
| September
2006 |
924,821 |
802,069 |
77,756 |
250,795 |
85,230 |
9,381,533 |
|
| Total |
11,634,744 |
9,945,856 |
936,754 |
3,065,758 |
1,081,786 |
119,987,344 |
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| Average
(mo) |
969,562 |
828,821 |
78,062 |
255,479 |
90,148 |
9,998,945 |
Highlight: More than 3
million page views in last 12 months!
Support Groups and total subscribers as of May
2006 and Aug 2007:
May
2006 | Aug 2007
NHL-DLC
. . . . . . . 168 170
NHL-Info . . . . . . . 850 856
NHL-Follic . . . . . . 460 528
NHL-MALT . . . . . . . 262 283
CNS-PAL . . . . . . . 17 21
See for details
Yahoogroups editor's pick in 2005: NHL-info:
Advocacy Highlights:
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Participant in advocacy efforts to modify the
clinical trial design of cancer vaccines. 2001 See for details
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Participant, Progress Review Group for Blood Cancers, NCI, 2001
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Participant, FDA ODAC Patient Consultant program
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Presentation to scientific and regulatory community:
Patient's Perspective: the Demand for Innovation vs. Safety
Leigh Thompson Renaissance Conference, Charleston, SC, 2005
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Exhibitor, ASCO 2004
Increasing Participation in Clinical Trials;
Optimizing Patient-Physician Consults;
Locating Clinical Trials for Lymphoma;
Preparing for Doctor Visits
See Our Exhibit Experience at ASCO 2004
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Participant in the "Chronic GvHD: The Next Frontier in Transplantation Medicine", NCI 2005
Providing patient perspectives on clinical trial design.
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Participant in the SEER workshop, NCI, 2005.
Providing perspectives on the need to provide statistical information
on the subtypes of lymphoma - that there is a significant gap
in the information provided as of 2005. See our follow up letter for details
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Participant in the NCI National Biospecimen Network Workshop, NCI, 2005
See for details
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Dec 2005: Speaker National Press Club
Providing patient perspectives on The Cancer Genome Atlas (TCGA) -
“a large-scale collaborative effort by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) to systematically characterize the genetic changes that occur in cancer.”
See for details: NCI
| PAL
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April 2006: Presentation at Favrille
Investigators Conference: Harmonizing Research Goals with Meeting the
Clinical Needs of the Participants PDF
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| April 2006: Presentation: Strategies
for Finding and Evaluating
Medical Information PAL pdf
Gilda's Club Delaware Valley
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July
2006: Presentation: Harmonizing Research Goals with the
Clinical Needs of Patients
Event: Trial Design Innovation Accelerating
Safer Drug Development with Adaptive Trials, Washington DC,
Bio
| Slides
with Narrative
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| February 2007: Report on survey: Interest, attitudes, and participation in clinical trials among patients with lymphomas
http://www.lymphomation.org/ptsurvey1.pdf
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| Dec 2007: Grassroots effort pays off:
Advocacy initiative to restore full payments for Radioimmunotherapy by
CMS, spearheaded by PAL, succeeds!
Medicare Act includes Legislative fix that
will save
RIT! ... then:
House votes 417 to 3 to, Bush signs bill.
House
and Senate Pass Medicare Legislation to Freeze 2008
Reimbursement for Therapeutic Radiopharmaceuticals at 2007
Levels
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