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Please notify Sarah Ziegler as soon as you or your child have a scheduled surgery date (four weeks
prior, if possible) so that I have time to coordinate with the Dr. Wuyts the transport of the tumor
sample.
You will be notified that you or your child has been accepted into one of these studies.
Approximately one week before surgery you will receive a kit by Federal Express, containing everything
necessary for the collection and return of surgical specimens, including consent forms, instructions,
and per-paid return Federal Express label.
prior, if possible) so that I have time to coordinate with the Dr. Wuyts the transport of the tumor
sample.
You will be notified that you or your child has been accepted into one of these studies.
Approximately one week before surgery you will receive a kit by Federal Express, containing everything
necessary for the collection and return of surgical specimens, including consent forms, instructions,
and per-paid return Federal Express label.
This tumor collection form is encrypted with the following as required by HIPPA regulations, SSL 3.0,
RC4 with 128 bit encryption (High); RSA with 1024 bit exchange. If you have any trouble, viewing this
form please click this following link www.mheresearchfoundation.org/ssl/tumor_sample_collection.html
RC4 with 128 bit encryption (High); RSA with 1024 bit exchange. If you have any trouble, viewing this
form please click this following link www.mheresearchfoundation.org/ssl/tumor_sample_collection.html
|
| Collection of Exostoses / Osteocondromas For Research Study |
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 3/14/08, 4:00pm 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.
RESEARCH PARTICIPATION CHECKLIST:
(FOR PARTICIPANTS RECEIVING COLLECTION KIT TO THERE HOME).
1. After agreeing to participate in a research study that requires donation of surgical specimens
obtained during a medically prescribed surgical procedure, you will receive a kit.
2. Upon receipt of the kit, please notify Sarah Ziegler by phone or email. If the box has not been
received, that will give us enough time to resolve any problems.
3. Open the box and examine the contents.
4. Read all instructions.
5. Please read and sign consent forms where indicated.
6. Open the styrofoam container and remove the freezer pack, which should be refrozen.
7. Packets that hold the containers that will be used for collection of specimens are to be refrigerated.
8. Keep the paperwork, return the singed consent forms, pre- paid FedEx label and styrofoam
container into the original box. It might be helpful to have a small roll of packing tape to reseal the
box,
if necessary, and to keep it with the kit.
9. Before leaving for the hospital, place freezer pack and refrigerated packets holding the containers
and blood tubes into styrofoam cooler. Make sure you also put any applicable consent and instruction
forms, the per-paid Federal Express Label, and packing tape are in the box, as well! if you or your
child are admitted to the hospital the day prior to surgery, have the hospital refrigerate (but not
freeze!) the box.
If the box containing the samples is returned to the laboratory without the consent forms it will be
destroyed.
10. Some hospitals will take care of packing up the box and having it picked up by Federal Express.
In some cases you may be given the packets following surgery (don't worry - the contents are not
visible!) and put them into the styrofoam container, take the box to the shipping / mailing room
located in the surgical facility.
Samples are taken from exostoses that are being removed for medical reasons, and blood is drawn
during surgery. It is also important to remember that there is no cost to participating families or
hospitals.
I understand that participation in any research study will not affect my immediate health care; that
participation is entirely voluntary; and that non-participation will not influence my medical treatment.
I also understand that by registering with the National MHE Research Registry. I am not obligated to
become a member of any organization or support group, to participate in any research that is being
conducted.
If you have any questions at all regarding the nature of the research or about the role that participants
play, please feel free to call or email.
Sarah Ziegler, National Director of Research and Coordinator of Clinical Information,
Executive Director of the National MHE Research Registry,
Liaison Officer, University of Antwerp, Department of Genetics, Belgium
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
NOTE: THE FACILITY WHERE THE SURGERY IS PERFORMED WILL STILL BE RESPONSIBLE
FOR PERFORMING ITS OWN PATHOLOGIC EXAMINATION AND SHOULD BE CAREFUL TO
KEEP WHATEVER PORTION OF THE SPECIMEN IS REQUIRED FOR THAT PURPOSE.
(FOR PARTICIPANTS RECEIVING COLLECTION KIT TO THERE HOME).
1. After agreeing to participate in a research study that requires donation of surgical specimens
obtained during a medically prescribed surgical procedure, you will receive a kit.
2. Upon receipt of the kit, please notify Sarah Ziegler by phone or email. If the box has not been
received, that will give us enough time to resolve any problems.
3. Open the box and examine the contents.
4. Read all instructions.
5. Please read and sign consent forms where indicated.
6. Open the styrofoam container and remove the freezer pack, which should be refrozen.
7. Packets that hold the containers that will be used for collection of specimens are to be refrigerated.
8. Keep the paperwork, return the singed consent forms, pre- paid FedEx label and styrofoam
container into the original box. It might be helpful to have a small roll of packing tape to reseal the
box,
if necessary, and to keep it with the kit.
9. Before leaving for the hospital, place freezer pack and refrigerated packets holding the containers
and blood tubes into styrofoam cooler. Make sure you also put any applicable consent and instruction
forms, the per-paid Federal Express Label, and packing tape are in the box, as well! if you or your
child are admitted to the hospital the day prior to surgery, have the hospital refrigerate (but not
freeze!) the box.
If the box containing the samples is returned to the laboratory without the consent forms it will be
destroyed.
10. Some hospitals will take care of packing up the box and having it picked up by Federal Express.
In some cases you may be given the packets following surgery (don't worry - the contents are not
visible!) and put them into the styrofoam container, take the box to the shipping / mailing room
located in the surgical facility.
Samples are taken from exostoses that are being removed for medical reasons, and blood is drawn
during surgery. It is also important to remember that there is no cost to participating families or
hospitals.
I understand that participation in any research study will not affect my immediate health care; that
participation is entirely voluntary; and that non-participation will not influence my medical treatment.
I also understand that by registering with the National MHE Research Registry. I am not obligated to
become a member of any organization or support group, to participate in any research that is being
conducted.
If you have any questions at all regarding the nature of the research or about the role that participants
play, please feel free to call or email.
Sarah Ziegler, National Director of Research and Coordinator of Clinical Information,
Executive Director of the National MHE Research Registry,
Liaison Officer, University of Antwerp, Department of Genetics, Belgium
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
NOTE: THE FACILITY WHERE THE SURGERY IS PERFORMED WILL STILL BE RESPONSIBLE
FOR PERFORMING ITS OWN PATHOLOGIC EXAMINATION AND SHOULD BE CAREFUL TO
KEEP WHATEVER PORTION OF THE SPECIMEN IS REQUIRED FOR THAT PURPOSE.
HOW YOU CAN PARTICIPATE:
If you are interested in participating in this study, you must register with the National MHE Research
Registry by completing the registration form.
All about the
We also need clinical information as part of this research project.
Please fill out the Clinical Questionnaire
Online fill registration form for donation of sample is located at the bottom of this webpage
This research project is being conducted by:
Wim Wuyts, Ph.D.,Principle Researcher MHERF research registry
Supervisor Department of Medical Genetics
University and University Hospital of Antwerp
Universiteitsplein 1
2610 Wilrijk
Belgium
The department of medical genetics of Antwerp (W. Wuyts) is a partner of the EuroBoneT
consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.
Dr. Wuyts also serves on the Scientific and Medical Advisory Board of the MHE Research Foundation.
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.
All researchers are required to sign: The MHE RESEARCH FOUNDATION / THE NATIONAL MHE
RESEARCH REGISTRY CERTIFICATE OF COOPERATION agreement.
To read a copy of this agreement
Abstract information concerning this research project.
Project description:
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).
This project aims the identification and study of genes involved in the disorder Multiple
Osteochondroma (MO) / Multiple Hereditary Exostoses (MHE). MHE / MO / HME is a hereditary bone
disorder characterized by the presence of bony outgrowths (osteochondromas / exostoses) on the
long bones. MHE / MO / HME patients suffer from pain caused by the pressure of the
osteochondromas / exostoses on neighboring tissues, organs or nerves. Often MHE / MO / HME
patients also show skeletal deformities. However, great clinical variability is observed between the
various patients, even within one family.
It has been shown that mutations in one of two genes, EXT1 or EXT2, are responsible for the majority
of MHE / MO / HME cases. However, the exact mechanism leading to the development of
osteochondromas is still not fully understood.
This project concentrates on the molecular aspects of MHE / MO / HME. Tumor and blood samples of
MHE / MO / HME patients are collected and studied to see how they differ from samples from healthy
individuals. This may provide valuable information on the mechanisms of osteochondroma / exostoses
development and may give us more insight in factors leading to the clinical variability.
Your medical care indicates the need to have bone tissue (tumor) removed. We obtain tumor / blood
samples from participants taken during this surgery they are sent to our laboratory for study.
Since this is a research study, the results will not affect the immediate health care of the participants.
Research records will be kept confidential to the extent provided by law. No information identifying you
will be released without your permission. All study information is coded and personal identifiers are
removed. Reports of this study may be disclosed in a scientific paper or presentation.
This study is approved by the University and University Hospital of Antwerp Committee for the
Protection of Human Subjects.
Sarah Ziegler signed confidentiality agreement as liaison officer for the following institutions.
To read copies of these certificates
If you have any questions concerning this research project please contact Sarah Ziegler.
Sarah Ziegler, National Director of Research and Coordinator of Clinical Information,
Executive Director of the National MHE Research Registry,
Liaison Officer, University of Antwerp, Department of Genetics, Belgium
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
If you are interested in participating in this study, you must register with the National MHE Research
Registry by completing the registration form.
All about the
We also need clinical information as part of this research project.
Please fill out the Clinical Questionnaire
Online fill registration form for donation of sample is located at the bottom of this webpage
This research project is being conducted by:
Wim Wuyts, Ph.D.,Principle Researcher MHERF research registry
Supervisor Department of Medical Genetics
University and University Hospital of Antwerp
Universiteitsplein 1
2610 Wilrijk
Belgium
The department of medical genetics of Antwerp (W. Wuyts) is a partner of the EuroBoneT
consortium, a European Commission granted Network of Excellence for studying the pathology and
genetics of bone tumors.
Dr. Wuyts also serves on the Scientific and Medical Advisory Board of the MHE Research Foundation.
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.
All researchers are required to sign: The MHE RESEARCH FOUNDATION / THE NATIONAL MHE
RESEARCH REGISTRY CERTIFICATE OF COOPERATION agreement.
To read a copy of this agreement
Abstract information concerning this research project.
Project description:
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).
This project aims the identification and study of genes involved in the disorder Multiple
Osteochondroma (MO) / Multiple Hereditary Exostoses (MHE). MHE / MO / HME is a hereditary bone
disorder characterized by the presence of bony outgrowths (osteochondromas / exostoses) on the
long bones. MHE / MO / HME patients suffer from pain caused by the pressure of the
osteochondromas / exostoses on neighboring tissues, organs or nerves. Often MHE / MO / HME
patients also show skeletal deformities. However, great clinical variability is observed between the
various patients, even within one family.
It has been shown that mutations in one of two genes, EXT1 or EXT2, are responsible for the majority
of MHE / MO / HME cases. However, the exact mechanism leading to the development of
osteochondromas is still not fully understood.
This project concentrates on the molecular aspects of MHE / MO / HME. Tumor and blood samples of
MHE / MO / HME patients are collected and studied to see how they differ from samples from healthy
individuals. This may provide valuable information on the mechanisms of osteochondroma / exostoses
development and may give us more insight in factors leading to the clinical variability.
Your medical care indicates the need to have bone tissue (tumor) removed. We obtain tumor / blood
samples from participants taken during this surgery they are sent to our laboratory for study.
Since this is a research study, the results will not affect the immediate health care of the participants.
Research records will be kept confidential to the extent provided by law. No information identifying you
will be released without your permission. All study information is coded and personal identifiers are
removed. Reports of this study may be disclosed in a scientific paper or presentation.
This study is approved by the University and University Hospital of Antwerp Committee for the
Protection of Human Subjects.
Sarah Ziegler signed confidentiality agreement as liaison officer for the following institutions.
To read copies of these certificates
If you have any questions concerning this research project please contact Sarah Ziegler.
Sarah Ziegler, National Director of Research and Coordinator of Clinical Information,
Executive Director of the National MHE Research Registry,
Liaison Officer, University of Antwerp, Department of Genetics, Belgium
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
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Online fill registration form is located at the bottom of this webpage
