Vaccines and Autism link:
It's easy to confuse correlation with causation - Tony L. Hines

ODAC on Accelerated Approvals

Lymphomation Blog

Does Progression Free Survival predict better survival in Follicular Lymphoma? PDF

Regarding FDA transparency PDF

Letter to CMS on Radioimmunotherapy reimbursement policy  2009-CMS-letter.PDF 

Perspectives on Drug Reviews, Vaccine misinformation, Level of Evidence PAL

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.

UPDATE FROM SEER:

	Detailed Statistics for NHL http://bit.ly/SEER-NHL
	Detailed Statistics for Hodgkins http://bit.ly/SEER-Hodkgins

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."

Guidance: Strategies for Finding and Evaluating Medical Information
 
As presented at Gilda's Club Delaware Valley, April 2006

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? ...

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 ....

10 Rules for Redesign of Our Health Care System - IOM ~ Crossing the Quality Chasm

PAL's Mission

Commentary on AACR Molecular  Targets and Cancer Therapeutics 2005

Why we need the National Biospecimen Network

Recipe for Progress Against Lymphoma

OFF - Oneness, Fairness, Focus Rationale for a united effort

Our Fight is Similar - fighting cancer and terrorism - Patient perspectives

 

Patient attitudes towards trials: Report from our Lymphoma Patient Survey regarding 
interest and participation in clinical trials  PDF

Perspective: Adaptive Design Conference, July 2006, Washington DC 

Harmonizing Research Goals with Meeting the Clinical Needs of the Participants 
(slides with narrative) PDF

Perspective: Harmonizing Research Goals with Meeting the Clinical Needs 
of the Participants - Apr 2006 - PDF 

Presentation at Favrille Investigators Conference

Study Proposal:  Combine molecular profiling research with evaluating first-line use of patient-specific idiotype cancer vaccines - studyprop.pdf

Update: No longer feasible given the disappointing outcomes from vaccine phase III trials.

Perspective:  Advocating for Coordinated Immunotherapy Research 

Eliminating Suffering and Death Due to Cancer by 2015: The Future of Cancer Research - 
Let's not forget Immunotherapy! - A letter to Dr. Von Eschenbach

"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

Question:  Radiofrequency Ablation for lymphoma?  PAL

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?

Advocacy?  Radiofrequency Ablation for lymphoma? PAL

What Makes A Study Desirable - Known Obstacles to Accrual - 
Patient Perspectives on Clinical Trial Design

TRIAL DESIGN: Patients Against Lymphoma Presentation  Cancer Vaccine Conference, Boston - April 2003 Harmonizing Research and Treatment Goals Web version  Color PDF or B&W PDF PDF versions  PDF-Help

WHEN? Expedite Gene Profiling - Routinely snap freeze lymphoid tissue at biopsy

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.

Perspective: The Need for Content and Structure Standards for Published abstracts

Perspective: Changing the Treatment Paradigm for indolent NHL: treat early with novel agents?

Perspective Patient Access to Emerging Therapies  for Incurable Cancers 

Perspective: Bexxar Approval Petition Letter to the FDA 

Update: The ODAC has since recommended the approval of Bexxar and FDA has approved it.

Perspective:  What can we do to responsibly accelerate drug evaluations

Perspective: Accelerated Approval for Low Toxic Therapies - Draft proposal to investigators & FDA 

Perspective: The Progress Review Group plan -  The PRG plan and why it needs to be carried out  

Perspective: Letter to Mark McClellan, MD, PhD Commissioner, Food and Drug Administration 

Commentary on Abigail Petition - Compassionate Use Proposal

Perspectives:  Letter to CMS on proposed rate cuts for radioimmunotherapies Also:
Patient-driven | What's at Stake | We're not asking for charity |
Your Help is Needed | Will Washington Sentence Lymphoma Patients to Death? 

Question: Are patients with indolent cancers receiving too many CT scans?  Background information

The long-term risks associated with (repeated) CTs Appeals to the use of non-radioactive scans - Antonio M.C. Reis, M.D. and Maria de Lurdes F.V. Queimado, M.D., Ph.D.

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."