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 or @MHE-HME.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.
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 or @MHE-HME.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
Toll Free Phone Number: 1-877-486-1758
Cell Phone: 917-841-2217
Address 149 - 34 16th Road Whitestone, NY, 11357
Ziegler, Executive Director of the National Research Registry
Email:Sarahziegler@mheresearchfoundation.org
Toll Free Phone Number: 1-877-486-1758
Cell Phone: 917-841-2217
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
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.
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.
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.
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.
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| Latest Research Project is Now Open. This is the worlds largest human research study ever conducted on 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.
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
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
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.
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 this research project
research project is on going and needs your help.
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
This publication in part was a result of the MHE Research Registry this research project
research project is on going and needs your help.
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.
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.
This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation.
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.
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.
Written consent must be obtained to attach web pages or the files attached to this website. Please email webmaster.
This web page was updated last on 2/20/08, 4:00 pm Eastern time
| Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2008 The MHE Research Foundation |
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 linked on the NIH
National Library of Medicine, Directory of Health Organizations (SIS) website, as well as the link for Patient
Information on The Diseases Database a cross-referenced index of human disease, and 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
By the Health On the Net Foundation. Click here to verify.# HON Conduct 282463 and is linked on the NIH
National Library of Medicine, Directory of Health Organizations (SIS) website, as well as the link for Patient
Information on The Diseases Database a cross-referenced index of human disease, and 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.
granted Network of Excellence for studying the pathology and genetics of bone tumors.
