The Sol Goldman Pancreatic Cancer Research Center

Pancreas Cancer Website at Johns Hopkins: History

The Hopkins PC Website was born in the fall of 1995 when a patient's son came to Dr. Ralph Hruban, a pathologist at Johns Hopkins, and suggested we start a Website. The patient and his son were extremely impressed with the research and clinical program at Hopkins and felt that we had to "get the word out" to other patients and their families. The goal was to establish the leading pancreatic cancer Web site that would inform, and therefore empower, patients and their loved ones. The site had to be "user-friendly", but at the same time provide real substance. Dr. Hruban agreed to author the content of the site, but who could design it? I was coordinating the National Familial Pancreas Tumor Registry at the time and said I'd take a shot at the design and creation of the site. I studied a little HTML and soon launched the original site with blue-green background:
Screen capture of original site
The "chat room" (really an online discussion board), was added in the fall of 1996 and was an immediate success. Patients and caregivers from around the world quickly began to use it to trade information, sympathy, advice, and humor. To date there have been over 9 million hits to the chat room alone. Importantly, not only did the chat room provide much needed support to those facing a diagnosis of pancreatic cancer, but users used it to coordinate a grassroots effort to raise money and awareness for pancreas cancer. Although they had never met before, Paula Kim and Pam Acosta created and organized a wonderful fundraiser in Hollywoood. This first fundraiser raised enough money to start The Pancreatic Cancer Early Detection Laboratory here at Hopkins. PanCAN, an independent organization dedicated to education and advocacy for pancreas cancer, also grew out of the discussion board and the online meeting of several of its users.

In 1998 our humble, homely Website got a major facelift from a Medical Arts student, Jennifer Parsons (now Brumbaugh), who was working on her masters and decided to make an illustrated FAQ section her thesis project. With input from a focus group (of users culled from the discussion board), the Illustrated FAQ became a beautiful and educational addition to the site. The FAQ section now provides detailed and well-illustrated answers to most of the questions those facing a diagnosis of pancreatic cancer would have. Importantly, the Pancreatic Cancer Web site at Johns Hopkins is not static. It is constantly being updated. Dr. Hruban has always authored the rest of the site and kept the content up-to-date. He does not get paid to do this. He updates the "What's New" section usually once every one to two months and performs frequent maintenance to keep the other sections current. There have been many benefits from the Website. Not only have patients benefited from the wealth of information and support, but Hopkins research has also benefited in two major ways. First, thanks to the rise in awareness from the site, the National Familial Pancreas Tumor Registry (NFPTR) has increased its enrollment almost 100-fold. The registry, with blood and tissue samples (and detailed medical questionnaires) from members of families in which two or more people have pancreas cancer, now has ~850 families. Studying these families has greatly increased our knowledge of the genetics of pancreas cancer and we hope one day will lead to the discovery of the familial pancreas cancer gene. Second, research at Hopkins has benefited by generous donations from users of the Website. Often people who have lost a loved one have requested donations to Hopkins in lieu of flowers for the deceased. This money has been used to support young scientists with novel ideas, the most recent example being Dr. Anirban Maitra and his cutting edge gene chip technology ( Iacobuzio-Donahue CA,Maitra A, Shen-Ong GL, van Heek T, Ashfaq R, Meyer R, Walter K, Berg K, Hollingsworth MA, Cameron JL, Kern SE, Goggins M, Hruban RH). Discovery of novel tumor markers of pancreatic cancer using global gene expression technology. (Am J Pathol. 2002 Apr;160(4):1239-49).

Eighty percent of the donations go directly to PC research and the other twenty percent help pay for infrastructure in the labs. To learn more about how you can support pancreatic cancer research at Johns Hopkins, click here.

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