After completing a questionnaire on medical and family history, registrants are informed of studies that match their interests and eligibility. They also receive regular updates on the latest cancer genetics information. There's no obligation to participate in any of the studies. People who don't meet the various criteria might never be contacted about a study. Either way, all participants benefit by being the first to hear about the latest studies and research.
All information is kept secure, confidential and released only after consent by the participant.
It can never be used in a legal matter, nor can it be accessed by an insurance company. Identifying information such as name and address is kept separately from personal and medical information which is identified by code only. It can be difficult to enroll a large and diverse population from one geographic area. By pooling their data and resources, Penn and other centers are building one united database that will benefit everyone. Less time is needed for recruitment and studies can be conducted more quickly.