Still time and need for feedback: proposal on searchable fields

[Guest guest]

Greetings,

As you know, a good part of our mission is to locate credible, evidence-based

answers to your questions -- you need only ask by posting to the group -- and

also to provide a forum for mutual support.

But sometimes we get to ask the questions, or need to ... so that our advocacy

efforts reflect the needs, ideas, and wishes of the patient community.

This inquiry is about that .... in this case, how to make ClinicalTrials.gov

easier for you (or patient-volunteers like us) to use ... How to make it able

and willing to find studies that match your clinical situations or treatment

goals. Such as lymphoma studies that do not require relapse from prior

treatment.

If you have never attempted a clinical trial search

you might try today by going to:

Basic Search: http://clinicaltrials.gov/ct2/search

or Advanced Search: http://clinicaltrials.gov/ct2/search/advanced

To our questions and goal:

Our draft proposal to enhance clinicaltrials.gov:

See http://www.lymphomation.org/settingsrch.pdf

If you've read an earlier version of the proposal, skip to the bottom of page 3

and focus on the PROPOSALS on pages 4 to the end. We are also seeking feedback

on the summary, which has been modified a bit as well.

Why the focus on trials? We simply cannot make progress (learn which treatment

is best for whom, or if new therapies provide benefits that offset the risks)

without our participation in clinical trials. How else?

So we look forward to learning what you think. Post comments to the group as a

Reply, or email to karls@... .

Specifically, we want to know which of the Search fields on pages 4 and 5 would

be most important to finding what you are looking for in a study? Perhaps what

you feel has been left out, or should be deleted. Comments on better ways to

phrase our proposal are always welcome too.

Many thanks in advance!

Karl

Patients Against Lymphoma

www.lymphomation.org

bcc: advisors