When first diagnosed, the information coming from the doctors can seem overwhelming to someone not familiar with medical jargon and terminology. Websites providing information geared towards helping the layman understand medical information are important.

• Saying it in Patient-Speak
• Clinical Information
• Clinical Trials

• Genetics Home Reference
  A service of the U.S. National Library of Medicine, Genetics Home Reference has a page about Peutz-Jeghers Syndrome that is easy to understand. Links are given for terms that a reader may not understand. Additional resources are provided as well.
• Johns Hopkins Guide for Patients and Families: Peutz-Jeghers Syndrome
  This guide is available in electronic and print formats. Use it as a reference for yourself, and show it to your medical team.
  Editor’s note: The Johns Hopkins Guide is a .pdf file. You will need Adobe Acrobat Reader to view it. For information on obtaining a hard copy by mail, click here.
• MD Anderson Hereditary Colon Cancer Newsletter
  One patient talks about her experiences, sharing with readers of the Hereditary Colon Cancer Newsletter in the Summer 2000 issue.
• Mount Sinai Hospital, Toronto
  Mount Sinai Hospital in Toronto, Canada, has a clear and brief description of PJS. Included in this information page is a general description of the syndrome, its discovery, and likely screening procedures.
• Updates on Topics Relating to PJS
  Periodically, the list manager for the PJS Support Group will send out a letter to the group and to those who are not in the group. These letters are posted here as they are published.

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• Medline Plus
  MEDLINEplus has information written for the patient, giving links to additional information for terms that might be unfamiliar to the reader.
• National Office of Rare Diseases
  PJS is considered an orphan disease because of how rare it is. NIH has an office geared towards orphan diseases, and maintains a vast library of information for patients.
• The Network for Peutz Jeghers and Juvenile Polyposis Syndrome
  Epigenetic maintains a small website for Peutz-Jeghers Syndrome, offering general information and names of clinicians interested in PJS.

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• Cleveland Clinic: Clinical Trials — Capsule Endoscopy
  Editor’s note: This study is currently closed. Check this link now and then to look for new studies.
  The Cleveland Clinic department of Gastroenterology and Hepatology is running clinical trials with capsule endoscopy, and is looking for PJS patients. This study may be closed. Contact the Cleveland Clinic for details.
• Johns Hopkins Hospital
  Editor’s note: This study is listed as closed. Check this link now and then to look for new studies.
  Johns Hopkins Hospital has received additional funding for their PJS/Pancreatic Cancer Screening study. Funding expires June of 2004. Check out the National Cancer Institute website.
• NIH Clinical Studies
  The National Institutes for Health maintains a database of information on ongoing clinical studies patients can be involved in.

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