Why Become a Member?
Rare cancers cumulatively account for over 20% of all cancers, yet only 5% of worldwide cancer research funding is allocated to them. As you may know, there has unfortunately been very little research focused specifically on vascular cancer. Not surprisingly, there are therefore even fewer answers. CRAVAT is attempting to change all that.
Members show their support for a great cause and gain our support in return. Of course, finding a cure is paramount in our aim, but we also seek to provide an information source for all those who are suffering from vascular tumors. We want to be your source to learn as much as you can about vascular tumors and to keep up-to-date with all that’s new in the field. This is information will be derived from the medical literature, our personal experience, contacts in the medical research community. Furthermore, CRAVAT currently has information collected originally through the HEARDsupport.org website, an informational web forum, with key data on over three hundred patients. One of our goals is to add to this database and accumulate the most robust registry for study of patients with vascular tumors in the world. We plan to aquire information from our own members by collecting data from who have will fill out our up coming questionnaire (see below).
When you become a member, we will ask you to participate in the near future in a study to help learn more about vascular tumors. We plan to collaborate with physicians at the University of Illinois in designing a questionnaire for our members to fill out. We will first ask you to sign a consent form before and will remove all identifiable information from the questionnaire immediately after you complete it. The questionnaire will ask about key clinical factors, like the tumor location(s), how long have you had the diagnosis, what treatments were prescribed and results you’ve experienced, etc. The information will be stored in a secure file, and will be accessible only to the Administrator and the physician liaison to the University of Illinois at Chicago College of Medicine who will analyze the data. This physician will have access to the original data set so that we can contact you if additional information is necessary. However, we repeat, the data will be entirely de-identified before it is analyzed.
Note - This feature will be activated after we gain approval by the University of Illinois Office of the Protection of Research Subjects.
The de-identified information will be available only to members and registered medical personnel. The database will show clinical details of all members’ data but no personal information. You will be able to see how many others have your cancer, other people’s treatments, other doctors who have treated this, success rates, and so forth….basically ALL the information that you entered (less the identifying fields) of all the other members. This feature is not yet available.
We will encourage physician-scientists with an interest in vascular tumors to use the database to learn more about this disease group. Such studies might include for example test hypotheses through outcomes or demographic analysis. This feature is not yet available.
We hope to establish a forum whereby members can chat and discuss similar concerns This feature is not yet available