Virtual Trial: An internet-based brain tumor registry
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The Brain Tumor Virtual Trial is a study being done by the Musella Foundation For Brain Tumor Research & Information. The concept is to track the outcomes of individual patients and what treatments they do. We do not tell the patients what to do, just observe the results. The idea is to find a combinations of treatments that may work better than what is used now. Everyone with a brain tumor should participate. It is free and just takes a few minutes of your time. All data is submitted over the internet on this website. For details, select Virtual Trial from the menu above!

The abstract below was presented at the 1999 AACR Conference:


Virtual Trials: An internet-based brain tumor registry.

[PROC. AMER. ASSOC. CANCER RES. 40, March 1999]
Copyright © 1999 by the American Association for Cancer Research
Hayes RL, Levin M, Musella A, Selker RG, Fried A, Schulder M, Williams J, Arbit E, Lederman GS. Staten Island Univ Hosp (RLH,EA,GSL); Brookdale Med College (ML); NY Med Coll (AF); New Jersey Med Sch (MS); W Penn Cancer Ctr (RGS); Johns Hopkins Med Ctr (JW).


Developing a medical research registry is technically fairly simple but involves numerous practical, methodological and data management issues. We report our experience in setting up an observation, prospective registry of patients with brain cancer and preliminary findings on the reliability of the collected information. This unique project was conducted by the nonprofit Musella Foundation http://www. virtualtrials.com. This site consists of a database of demographics and basic medical information as well as treatment and outcome for each registrant. A confidential self-reporting system that includes written informed consent and ethical safeguards was developed. An on-line registration form is submitted along with a hard copy of pathology and MRI reports. From 3/4/97-3/7/98 (year 1 of operation) 331 patients were enrolled. The reliability of patient self-reporting was assessed by randomly selecting 25 pathology and MRI reports for review. Each were graded by a neurosurgeon and an oncologist (pathology) or a pediatric and a general neurosurgeon (MRIs). The self reported histology and change from baseline MRI were assessed by kappa statistic for nominal variable and weighted kappa for ordinal variables (change from baseline MRI). This analysis revealed a statistically significant high level of agreement between patient and physician interpretation. Data self-reported by patients at our internet site is accurate and reliable. However, several issues remain to be resolved including patient selection bias and confidentiality.




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