Welcome to the NOTE - THIS SITE IS UNDER CONSTRUCTION
thru Analysis, Research and Discovery
H.E.A.R.D. is a support group, originally established in 2002 to help people who have Epithelioid Hemangioendothelioma (EHE), after it's founder, Cynthia Pollak, started compiling a database of EHE patients from around the world. From 2002 to 2010, Cynthia collected data on over 300 people. for her International HEARD database (*), which was sought after by both patients and doctors worldwide. She personally contacted most of these people, and stayed in touch with them, partly in order to get regular progress reports. Her files were very basic, and extended over 150 pages!
When Cynthia approached Professor Clare Scott, (The Royal Melbourne Hospital) to show what one single person could do for a rare cancer, Clare saw the potential, and together with a small team, they developed CART-wheel,(Center for Analysis of Rare Tumors**), a user-freindly, ethical database, which is connected to BioGrid Australia, which provides the technology to link together the anonymous
patient information from various databases.
But now, we need YOU! We need your information in order to learn more about EHE, and to show the medical profession, and
pharmaceutical companies, that we do exist, and are looking for answers.
To help, by simply providing your information, please contact one of these representatives. Please note - no information will be released without your permission, and CART-wheel information is de-identified.
Click here for H.E.A.R.D. in Australasia
Click here for H.E.A.R.D. in Europe
Click here for H.E.A.R.D. in the UK
Click here for H.E.A.R.D in the US
Together, we have the strength to expand the knowledge, and treatment, for EHE, and make our voices be HEARD!
the following sections is a vital link in the overall EHE project.
International HEARD registry has been recognised as a meaningful tool for EHE
patients and doctors, and has been cited in medical papers for its valuable data.
The information is provided by you, our members, and is accessible to everyone
who contributes, as well as approved specialists – but other than that, it is a
confidential database. Members provide data about their cancer journey, when
diagnosed, what hospital, what medication, results of various procedures and
medications, etc. Members may then
access the data base – see who else has used a particular drug, is being
treated by a certain doctor, lives in the same area – or just scroll through
the whole database. The more members who
provide information for this registry, the more valuable it will become. The
E-team manages the Registry and can answer any queries you have about it.
The International HEARD Registry is located on this website.
Members can click the tab on the top of this page or just click here to see the latest version.
(**)CART-wheel is a data collection service run by .......?. Researchers, pharmaceutical
companies, and healthcare providers can access large sets of patient-provided de-identified data, to speed research.
They can see how many people have a particular disease and evaluate the urgency
for investigation. It is essential that as many EHE patients as possible
complete the CART-wheel questionnaire to show that EHE is not
really as rare as many professionals think, and we want answers NOW!
are asked to complete 30 or so questions, and to provide an update once or
twice a year. It is a strictly regulated database, accessible only to
Click here to go directly to the CART-wheel website. Members can update their own information, and also see a variety of reports and graphs.
CRAVAT (Center for Research and Analysis of VAscular Tumors) FOUNDATION is our education website. It provides
the latest explanations and information about EHE. It includes notes on what
research is being done, medical abstracts, an educational blog, and Q & A’s
about EHE. It is a registered Not for Profit organisation aiming to raise funds
for cancer research.
Click here to go to the CRAVAT FOUNDATION website
EHE International aims to help the EHE patient find the information they are looking for, as well as
Click here to go to the EHE International website
Spiel about FB .....Group
communication, discussions and support
Click here to go to the Facebook EHE website
Research - Regardless of how much we EHE'ers talk amongst ourselves, we need to have specialists actually working on projects to try to find a solution to EHE. Dr Brian Rubin of Cleveland Clinic is currently testing and developing interventions
based on his extensive research and discoveries with EHE, and is currently working on the first targeted therapy for EHE.
Click here to go to Dr Rubin's explanation of EHE on the Cleveland Clinic website
Also, we have a very important request: If you are an EHE patient and will be undergoing surgery in the near
please contact the office of Dr. Brian Rubin, Anatomic Pathology
Department of the Cleveland Clinic at 216-445-5551
to see about
contributing your tumor specimen to his important research. Thank you.
FINALLY - NO research can take place without the essential funds....
Click the tab on the top of the page, or just click here - to help fund a cure for EHE
Note - the information and opinions expressed herein are those of the author, who has no medical training. Refer to Disclaimer.