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.
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
Collection of Exostoses / Osteocondromas For Research Study

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
Phone number: 561-594-5305

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
Address: 255 Everina St
West Palm Beach, Florida 33401
Phone:
561-594-5305
Online fill registration form is located at the bottom of this webpage
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Disclaimer:   While many find the information useful, it is in no way a substitute for professional medical care.
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In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.
 

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