The National MHE Research Registry was formed to create a national listing of people diagnosed with Multiple Hereditary
Exostoses (or other names used to describe this disorder) who are interested in participation in MHE / MO / HME research.

Participation may take the form of answering questionnaires pertaining to the clinical manifestations of MHE / MO / HME and / or
donating surgical specimens of exostoses and blood samples obtained during medically prescribed treatment, obtaining X-rays
and medical records. I also understand my participation in any research will cost me nothing.

The registry serves to provide information on current research being conducted.  Details on what is involved in participation of
research projects, and both assistance and support to participating families throughout the entire research process.

The MHE Research Foundation has not endorsed any family support groups, other then the support that this foundation
provides to people affected by MHE / MO / HME and the (
connection corner).  Your participation in any support groups has no
bearing nor will it affect your participation in research projects that this foundation is collaborating on.  Family support is very
much valued by this foundation, this foundation does not endorse these types of organizations in general, as it is very difficult  
to insure the on going quality of service they may provide. The MHE Research Foundation does not verify nor endorse
information concerning MHE / MO / HME or research that may be conducted on any other website. As stated on the bottom of
every page of the foundation's website, our website is reviewed by the Scientific and Medical Advisory Board and is also
reviewed by other prominent professional organizations.

This foundation makes sure that families have all of the necessary information needed to make the decision that will be right for
them, The National MHE Research Registry provides explanations of research projects in layman's terms. All research
institutions and researchers affiliations are clearly disclosed.

All forms of communication are considered stickily confidential (Any information contained in the following: Online communication
forms, email, online submissions of any kind, hard copy correspondence, phone conversations, names, all phone numbers,
emailed addresses, home or work address...) This foundation does not release  nor will it in the future release any form of
confidential information as stated above. Other then when you sign a sign a release indicating your consent for research and
this information could be released only to the principle researcher. Principle Researcher MHERF research registry is indicated next
to a researchers name.

All on line submissions, hard copy forms (paper), electronic forms and email's are entered into off line data base that has no
Internet connection.

All hard copy (paper) confidential information, is located in a locked fire retardant safe.

Any email address associated with the MHE Research Foundation other than a Researcher or Medical Professional will always end
with @mheresearchfoundation.org. If you receive email that does not end this way, please disregard as it was not sent by this
foundation and is not connected with this foundation in anyway.
MHERF Complete Privacy Policy Please be mindful to check
with the Privacy Policies of any other organization that you maybe in contact with as these organizations Privacy Policies may
differ from our foundation. You may want to check safeguards & website security of these organizations (SSL 3.0, RC4 with
128 bit encryption (High); RSA with 1024 bit exchange) such as MHERF  has insured to protect you personal information. If you
have any questions about the privacy policies of this foundation's please
email or call the toll free phone number and we will be
happy to answer any questions you may have concerning this foundation.

Detailed information concerning each research project can be read when you click each project tabs below.

You may participate in these research projects once you have completed a registry form below.
If you have any questions pertaining to the Registry or any research project, please contact: Sarah Ziegler, Executive Director
of the National Research Registry
Email:
Sarahziegler@mheresearchfoundation.org
Phone: 561-594-5305
Address 149 - 34 16th Road Whitestone, NY, 11357
All researchers are required to sign: The MHE RESEARCH FOUNDATION / THE NATIONAL MHE RESEARCH REGISTRY
CERTIFICATE OF COOPERATION agreement.
To read a copy of these agreements
Hard Copy if you like to mail.
All online submissions:
Once you have clicked submit tab a window will appear, you can print a copy for your own personal records.
If you are having surgery and would like to donate a tumor sample for the research project stated above, please complete
Research Registry Registration Form and the DONATE Exostoses, Osteochondromas (Click green tab) The researchers listed
below would like tumor samples.  If you have already completed you MHE registry form, you do not need to do this again.
You may register with The National Research Registry by completing the registry form.
Please take the time  fill out the Clinical Questionnaire once you have completed the Research Registry Registration Form.

YOU DO NOT NEED DO BE HAVING SURGERY TO PARTICIPATE IN THIS QUESTIONNAIRE.  We are requesting everyone who
has been diagnosed MHE / MO / HME to complete this questionnaire.

Pancras C.W. Hogendoorn, M.D, Ph.D. Principle Researcher MHERF research registry
Professor of Pathology
Leiden University Medical Center
Chairman of EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.

Wim Wyuts, PH.D. Principle Researcher MHERF research registry
Supervisor DNA Diagnostics,
Department of Medical Genetics University
and University Hospital of Antwerp, Belgium
Partner in the EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.

Luca Sangiorgi, M.D., PH.D. Principle Researcher MHERF research registry
Head of the Genetics Unit, Lab Oncology Research, Coordinator, Rare Skeletal Diseases,
Rizzoli Orthopaedic Institute, Bologna, Italy,
Coordinator of the Italian Registry of Hereditary Multiple Exostoses,
Coordinator Virtual Lab of Bioinformatics for Genetics and Biotech (Gebba-Lab),
Partner in the EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.
Samples still needed for the largest human research study mechanisms that cause MHE / MO / HME.
Howard Hughes Medical Institute Holiday Lectures on Science Programs. This four part lecture series held in 2002 will give you a
better insight and understanding of research that is now being conducted in MHE now. Once you have viewed these 4 lectures
you can view other illustrations on the MHE research section of the website.
Catalog of the Howard Hughes Medical Institute where you can browse and order from a variety of award winning publications,
videos, DVDs and materials ALL 100% FREE OF CHARGE, including shipping.



Here are some suggestions
The Double Life of RNA - DVD, VHS
The Genes We Share with Yeast, Flies, Worms and Mice - Print
Learning from Patients: The Science of Medicine - DVD, VHS
Scanning Life's Matrix:  Genes, Proteins, and Small Molecules - DVD, VHS
Sarah Ziegler National Director of Research, Executive Director of the National Research Registry has signed a CERTIFICATE OF
COOPERATION AND CONFIDENTIALITY as Liaison Officer for the following Institutions.
To read a copy of these agreements
NOTICE: the agreements below, Click Here tabs will take you to the website page where these documents are located.
Certification windows will also appear on these web-pages, you will need to click the close tab in the windows to read these
documents. There are two certification windows per page, please close both.
The National MHE Research Registry
Press Release 1 / 19 / 08
This publication in part was a result of the MHE Research Registry
Mutation Screening of EXT1 and EXT2 by Denaturing High-Performance Liquid Chromatography, Direct Sequencing
Analysis, Fluorescence in Situ Hybridization, and a New Multiplex Ligation-Dependent Probe Amplification Probe Set
in Patients with Multiple Osteochondromas
Ivy Jennes*, Mark M. Entius{dagger}, Els Van Hul*, Alessandro Parra{ddagger}, Luca Sangiorgi {ddagger} and Wim Wuyts*
To Read this publication Click Here
Both Luca Sangiorgi, M.D., Ph.D. and Wim Wuyts, Ph.D. are members of our Scientific & Medical Advisory Board  and our
foundation helped support this research
Identification and characterization of genes and molecular mechanisms causing multiple osteochondroma (MHE /
MO / HME) and related bone disorders, Clinical and  molecular study of factors implicated in Multiple
Osteochondroma (MHE / MO / HME).
It is only by the collection of large numbers of samples and data that major progress can be made in human study of MHE.
Tumor samples are needed!, if you are under going surgery please let us know,The MHE Research Foundation and the
Researchers working on this project would like your help. Please consider participating in the project. It does not cost you any
thing to participate. Please consider completing the on-line clinical questionnaire, full details can be read by clicking the tabs
below. This research project is not simply depending on samples & data from people with MHE / MO / HME that visit this
website, this research project is obtaining samples & data directly from hospitals around the USA and multiple countries.   

How ever you are a very important part of this approach and your help is greatly needed. There has been major problem in
human studies up until now. This was mainly due to the low number of available samples in previous studies and  the lack of a
uniform phenotype scoring systems used. With the construction of this large MHE / MO / HME network these problems have
been addressed and by pooling these samples (construction of a tissue bank) and data of MHE / MO / HME patients & uniform
phenotype scoring system. These researchers are also in contact with researchers using animal models to study MHE / MO /
HME, together we feel that even larger gains will be made in the future. Together this approach will help greatly in achieving a
much better understand of MHE / MO / HME.
Research can now move forward in a more comprehensive direction.

The MHE Research Foundation will be collaborating on this new research project with the following researchers listed below.
These researchers are partners of the
EuroBoNeT consortium, a European Commission granted Network of Excellence for
studying the pathology and genetics of bone tumors. The researchers heading up this project are being assisted by other
researchers in this field. All study information is coded and personal identifiers are removed.

This foundation gives full detailed disclosure, including signed agreements between this foundation and researchers.  We also
give full back round information of these researchers.  We believe you should know where and how this data is being used. This
foundation will never simply request for participation without full and detailed information.

One question many people have is why Belgium, Italy and Netherlands? Because most labs do not invest in laborious and
expensive techniques to identify
mutations which are not found by standard mutation analysis of EXT1 and EXT2. To identify a
potential EXT1 or EXT2 mutation, negative patients are analyzed with the most sensitive techniques, including
RNA and
promotor analysis to identify intronic or regulatory mutation. The identification of mutations in regulatory regions may point to
sequences crucial for proper EXT regulation and these sequences can be used as targets for the identification of proteins
regulating EXT expression.  Most research that has been done in humans used only two step approach,
standard genetic
testing and clinical information or standard genetic testing and the study of tumors. This research is using comprehensive
genetic testing techniques, pathology,  studying chondrocytes isolated from the exostoses and clinical information as well as
the additional clues that come from animal models. Funding is also an issue, human genetics study into MHE / MO / HME is not
being funded by the National Institute of Health, hence the vast amount of this type of research is not done in the United
States.

Pancras C.W. Hogendoorn, MD, Ph.D. years of experience in pathology and genetics of bone tumors has paid off ! He's the
leader of the
EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors and the use of comprehensive genetic testing methods & techniques.  Wim Wuyts , PH.D. has
researched for years by comprehensively studying genetics in MHE / MO / HME snd by using these state of the art genetic
testing methods & techniques as well and was one of the first researchers to discover the first of the two genes that causes
MHE / MO / HME. Luca Sangiorgi, M.D., PH.D. has also been using comprehensive genetic testing techniques in his research, the
Rizzoli Orthopaedic Institute has a clinic set up for MHE / MO / HME.  Dr. Sangiorgi is also Coordinator of the Italian Registry of
Hereditary Multiple Exostoses as well. All of these researchers sever as advisors to family support groups in there countries.
Dr. Wuyts and Dr. Sangiorgi Scientific sever on the Scientific and Medical Board of this Foundation and we are working very
very closely with Dr. Hogendoorn as well.

Simply put! this is a DREAM TEAM conducting this research with state of the art testing methods & techniques when it goes to
genetics and pathology in the world of MHE / MO / HME research!. MHE / MO / HME research deserves the best and does not
have to settle for less.  They all understand and are deeply concerned about quality of life issues people with MHE / MO / HME
face every day, thus can incorporate this into research. The MHE Research Foundation is in a uniquely qualified position of be
able to help bring research forward and address quality of life issues within research it self.  Working directly with researchers
allows us to give insight into secondary symptoms that have been over looked in many clinical settings. As important if not
more important  having direct contact with so many people living with MHE / MO / HME enables us to help address quality of life
issues in this research settings as well. This was clearly illustrated by Sarah Ziegler,  MHE Research Foundation's National
Director of Research in the presentation she gave at the
Connective Tissue Oncology Society conference Nov 2006 held in
Venice Italy. (When clicking CTOS link it will take a few minutes to load as there is a large amount of data located on this
webpage)

This is a well balanced comprehensive research approach, the first of its kind. It is this foundation's hope by giving detailed
information about this research project and the How's and Why's that will lead people with MHE / MO / HME to want to
participate in MHE / MO / HME Research. By bring both the MHE /  MO / HME community and the Orthopaedic community
together, the numbers of samples and data will add up and ultimately make this research bear more fruit in the future.


                                                       
EuroBoNet executive summary PDF file LINK

Pancras C.W. Hogendoorn, MD, Ph.D. Principle Researcher MHERF research registry
Professor of Pathology,
Department of Pathology, Leiden University Medical Center,
Molecular tumor pathology and tumor genetics, Netherlands.
Head of EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.

Wim Wyuts, PH.D.Principle Researcher MHERF research registry
Supervisor DNA Diagnostics,
Department of Medical Genetics University
and University Hospital of Antwerp, Belgium
Partner in the EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.

Luca Sangiorgi, M.D., PH.D.Principle Researcher MHERF research registry
Head of the Genetics Unit, Lab Oncology Research,Coordinator, Rare Skeletal Diseases,
Rizzoli Orthopaedic Institute, Bologna, Italy
Coordinator of the Italian Registry of Hereditary Multiple Exostoses
Coordinator Virtual Lab of Bioinformatics for Genetics and Biotech (Gebba-Lab)
Partner in the EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.

PDF Link to this information, you may want to print a copy and take it with you to your physician.
We are providing this information in PDF format as the tool bar and tabs do not need to be printed.
Also once you have completed the registry form and Collection Of Exostoses Osteochondromas For Research Project Clinical
and molecular study of factors implicated in Multiple Osteochondroma (MHE / MO / HME) FORM below you will be emailed a
participation letter directed to your physician to take with you to your next medical appointment.
MHE Research Foundation Video Library mutlple videos concerning an over view of research genetics, Orthopaedics, and pain
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Press Release 10/06/09
This publication in part was a result of the MHE Research Registry, this research project is on going and needs you
help and participation.
Multiple osteochondromas: mutation update and description of the multiple osteochondromas mutation database
(MOdb).
Jennes I, Pedrini E, Zuntini M, Mordenti M, Balkassmi S, Asteggiano CG, Casey B, Bakker B, Sangiorgi L, Wuyts W.
Hum Mutat. 2009 Oct 6










































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Disclaimer:   While many find the information useful, it is in no way a substitute for professional medical care.
The information provided here is for educational and informational purposes only. This website does not engage in the practice of medicine.
In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.
 

This web page was updated last on 12/16/09, 4:0O pm Eastern time
The MHE Research Foundation, we comply with the HONcode standard for health trust worthy information: By the Health On the Net Foundation.      
Click
here to verify.# HON Conduct 282463  and is the patient support link on the US Government Genetics Home Reference (http://ghr.nlm.nih.gov)
website, also linked for Patient Information on
The Diseases Database a cross-referenced index of human disease, as well as the
Intute: health & life sciences  a free online service  providing access to the very best Web resources for education and research located in the  UK
The MHE Research Foundation is proud to be working with the EuroBoNeT consortium, a European Commission granted Network of Excellence for
studying the pathology and genetics of bone tumors.
This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation.

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The MHE Research Foundationis proud to be a partnering society with ASMB & CTOS