Clinical Care Program, since 1994
Goals of the Clinical Care Program
- To improving diagnosis and treatment of VHL
- To provide coordination of care across medical specialties
- To provide resource center for patients and physicians who are new to VHL
- To provide a ready channel for communicating advances to these centers
- To provide a model which can be replicated elsewhere
Where are the Patients?
Everywhere in the world. We are already in touch with more than 15,000 people with VHL in more than 100 countries. VHL occurs in every ethnic group, everywhere.
Rare Disease Challenge...
It's usually one patient, one doctor, their first time with VHL.
Role of the CCC
The Clinical care center provides backup to the local physician, reviewing scans, consulting on diagnoses, providing additional expertise where necessary, to ensure that the patient is getting optimal care.
Chain of Information
Similarly, the clinical care centers themselves will not know everything. They will have more experience with VHL, but still limited to the patients they have seen. Their backup comes from the Expert Centers in the world.
Role of the Expert Centers
There are five primary Expert Centers in the world, where the bulk
of the research is concentrated: US National Institutes of Health; The
French VHL Study Group under Stéphane Richard, Dr. Neumann's
team at the University of Freiburg, Dr. Gross' team at Hadassah University
Hospital in Israel, and Dr. Shuin's team at Japan. These centers
have the greatest breadth and depth of experience in VHL:
Breadth = 100-600 patients with VHL
Depth = more than 20 years experience with VHL
These are the major centers conducting research on better diagnosis, treatment, and finding a cure for VHL.
They publish articles in peer-reviewed journals, adding to the general base of knowledge about VHL and educating the medical community.
Some of them do primarily consulting and second opinions, not daily care for every person. It is in our interest to keep them focused on research.
What We Ask of a Clinical Care Center
- Designate a point of entry for VHL patients
- Take responsibility for helping patient find all needed specialists
- Check all areas of the body which need screening
- Ensure communication among the various specialists
- Try to coordinate appointments to minimize the patient’s time at the center
- Serve as a focus for second opinions and referrals from HMO’s
What We Contribute
- Refer patients and physicians
- Publicize the program
- Develop standards of care, suggested protocols, handbooks, brochures
- Distribute Clinical Care Bulletins to share the latest information, and to enlist participation in studies
- Facilitate compilation of patient cases in order to obtain meaningful data for clinical studies. In order to assemble a meaningful number of cases on a particular topic, we must assemble data from multiple centers in multiple countries.
The list of current participants in the CCC program is on the website.
Please help us to enroll additional centers. If your
hospital is already providing good care for VHL, they might be a good
candidate for participation in this program. Write to clinics@vhl.org
Teamwork for Health
Families and Health Care Professionals
working together
to improve diagnosis, treatment, and
quality of life
for individuals and families
affected with von Hippel-Lindau
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