click here for:
Research
Questionnaire
|
Adobe reader
download
|
The VHL Family Alliance is building a research database to further the
knowledge of researchers, physicians, and patients about von Hippel-Lindau disease. The
VHLFA is an ideal clearing house for gathering this information. We have the largest
database of VHL patients' addresses in the world. We are in a unique position to collect a
vast quantity of data which will attract researchers and which, most importantly, will
eventually improve diagnosis, treatment, and quality of life for people with von
Hippel-Lindau disease.
Goals of the Database. The goal of the database is to
encourage further research into VHL and to encourage scientific articles to be written for
journals. Susan Booker, Research Program Coordinator for the Hereditary Colorectal Cancer
Registry (HCCR) at Johns Hopkins Medical Center states that the HCCR is "just a gold
mine for people who want to learn about the disease."
In 1992, the majority
of articles about VHL in the medical literature talked about 1-3 cases. By 1995, a few multi-center studies
contained information about 50-100 patients. Larger studies in Germany, France, and the United States have taught us a great deal. But even these have some "selection bias" -- including people predominantly from one area, or selected because they were interesting to a particular line of inquiry. By gathering statistical information on
larger pools of patients, we hope to gain greater perspective on the range of issues in
VHL, the effectiveness of various treatments, and potentially the correlation between
types of mutations and types of tumors in VHL.
In June 1994 the Alliance began examining the feasibility of such a
database. In 1995 information was gathered on an experimental basis from fifty volunteers
who attended the California state meeting and the Boston VHLFA Conference, plus
participants from Spain, Australia, and New Zealand. Information from more than 60 people
was entered into a trial database. This helped us identify some
changes we needed to make to the questionnaires.
The resulting questionnaire was made available in
the June 1996 newsletter, and on the internet. In 2007 the questionnaire has been further refreshed, in conjunction with our international affiliates. Patients from all over the world are invited to participate in
submitting data about VHL, and physicians are encouraged to distribute the questionnaire
to any patients they may have.
click here for:
Research
Questionnaire
|
Adobe reader
download
|
We hope that you will take the time to fill out the
questionnaire, or ask your patients to do so, to add your comments about the questionnaire itself, and to add any
questions you would like to see in the next revision.
Confidentiality of patient information is of utmost
concern to the Board of Directors of the VHLFA. Each individual is assigned a
identification code, and information in the research database is identified only by code.
Name, address, and other personal details are kept entirely separate. The VHLFA and NDRI volunteers
and staff who handle the questionnaires sign confidentiality agreements. Only data from patients who
have given their consent will be entered into the research database.
Summary Statistics may be made available in this
newsletter, and on our home page on the internet, as a demonstration of the kind of things
we can learn from the database. For a sample of summary information, see the articles listed below. Statistical information (without patient identification) may be given out to
researchers for the purpose of journal articles, statistical studies, etc., at the
discretion of the Research Management Committee and its advisors. Patients' name and contact information is never disclosed to researchers.
Access for Researchers. The VHLFA
will actively encourage researchers to apply for access to the information stored in the
research database. Procedures for accessing the data will appear in the newsletter and on
our home page on the Internet.
Requests to contact patients directly will be reviewed by the Research
Advisory Council and members of the Medical Advisory Board. If the request is approved,
VHLFA staff will determine which patients fit the researcher's criteria, and will notify
them of the project or provide contact information. If participating patients prefer not to be contacted, their information will be used in
the statistical studies only.
Tissue Banking. People who donate tissue to the Tissue Bank will be asked to fill out this questionnaire to record the state of their health at the time of the donation. You may be asked to refresh the data if you donate additional tissue, or simply to update the information in the future.
Housing the Database . The early database was funded in part by the Murray Foundation and housed in the VHLFA offices. The 2007 update is funded in part by a grant from the Alex's Lemonade Stand Foundation and made possible through the efforts of Alex Anderson and his family in New Jersey.
Many thanks to Patti K. for her essential groundwork on the feasibility
and structure of the database, to Bill Dickson for his work in structuring the
Research Committee and the Research Grants process, and to Alex Lewis and Cassie Désir for their work on the 2007 update.
Further information.
