Gynecological Cancer Research Network

Can We Help Make Cancer Research Better?

June 18, 2009 at 5:15 pm gcrnblogger Leave a comment

I tried to volunteer.  I wanted to volunteer.  But there was no place for me to go.  That’s what I was told after participating in a study for LA County as a newly diagnosed ovarian cancer patient.

How does this make sense?  A small group of women get this disease and, unfortunately, the survival rate isn’t good.  Why wouldn’t the scientists want to learn as much as they could about us, rather than waiting for more women to get ill?  I came up with an idea to change this, and I’d like to know what you think.

Would you volunteer for an on-going investigational (non-clinical) medical research panel? The purpose would be to assist the medical community in its investigational research efforts about gynecological cancer prevention, risk assessment, and early detection; its focus would not be on clinical (drug) trials.

The basic assumptions:

• It would be completely private and secure.
• The entire undertaking would be non-profit.  (No buying or selling.)
• It’s up to you to opt-in.  (You’d likely get an invitation from the government agency you were reported to at the time of your diagnosis asking you to join; this group would not be allowed to share your contact info with anyone.)
• Only approved investigational researchers would be able to submit questions or make requests to examine answers given in prior surveys.  This would likely be done through a central agency, such as the NCI or NIH.
• Questions would be sent roughly once a month.  You would enter your answers online or by phone using a PIN.

The benefits of this new approach are numerous, but the primary one is this:  for an individual study, data could be collected in months rather than years using this national database of volunteers.  Simply put, we’d get answers sooner and we could save more lives.

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What do you think?  Please take part in the poll below.  Thank you!

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Entry filed under: New Medical Ressearch Approaches, Public Participation in Cancer Research. Tags: cancer research, cervical cancer, endometrial cancer, gynecological cancer, ovarian cancer, participation in medical research, uterine cancer, vaginal cancer, volunteer cancer research.