When people with cancer need treatment, don’t they have the right to know ALL their options?

By Stephen Goldner, Esq. RAC

Every year, millions of Americans contact a Support Community, such as the American Cancer Society.  One of the resources they look for are new treatment options for their disease.  But who provides this critical information and how accurate is it?

Few people know that 2 million Americans are in a clinical trial right now.  But a five-month analysis by an FDA regulatory advisor identifies problems in the information given to patients.  People with cancer and other serious diseases are being given inaccurate and incomplete information when they look for clinical trial options.

The services relied upon by the American Cancer Society and other organizations omit 25% to 93% of the relevant clinical trials, compared to the reference website Clinicaltrials.gov. By FDA mandate, clinical trials need to be listed at www.clinicaltrials.gov if they desire FDA approval.

Four of the top trial referral services were evaluated.  EmergingMed, eviti, TrialReach and TrialX —the services used by American Cancer Society and others —varied widely in the accuracy and completeness of information offered.  The analysis is being prepared for publication in November, 2013.

An unbiased and accurate approach is needed.  This approach has been created by a patient-focused organization based in Bloomfield Hills, Michigan.   CureLauncher reviews all enrolling clinical trials to help each person make the best treatment decision.

CureLauncher’s Relationship Managers start with a simple 10-question conversation with each person.  This information enables CureLauncher to match people to clinical trials based on their unique goals and conditions.  CureLauncher is the only service that calls the trial sites and helps people through the entire journey.   This service is provided at no cost to the patient.

In conclusion, the five-month study found that, measured against ClinicalTrials.gov, leading clinical trial matching companies used by non-profit organizations, failed to report appropriate clinical trials; misidentified other trials; listed clinical trials no longer enrolling; and provided hard-to-understand information.  The results find that the incomplete and inaccurate information provided by these services may be a critical reason why more patients are unable to benefit from clinical trials.