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| Research Registry Clinical Questionnaire |
Please be sure that you have registered in The National MHE Research Registry a national listing of people diagnosed with
Multiple Hereditary Exostoses (or other name used to describe this disorder).
The National MHE Research Registry Clinical Questionnaire is part of the MHE Registry. This questionnaire was developed with the
researchers and clinicians our foundation is working with. The data being collected in this questionnaire is being used as a part of
research projects into the understanding of MHE / MO / HME. Data being collected is used by the following researchers as a part
of there research:
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
This research has been approved by the Human Subjects Committee University of Antwerp.
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)
The research has been approved by the Human Subjects Committee Rizzoli Orthopaedic Institute.
These researchers are partners of the EuroBoNeT consortium, a European Commission granted Network of Excellence for
studying the pathology and genetics of bone tumors.
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.
Sarah Ziegler signed confidentiality agreement as liaison officer for the following institutions.
To read copies of these certificates
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.
Please submit the National MHE Research Registry Form before you submit this MHE Clinical Questionnaire Form. If
you have already submitted a MHE research registry registration form then you do not repeat.
This Organization strictly follows all HIPAA regulations
Note: In cases where multiple family members are to be included in the research registry, please fill out a separate forms for
each individual.
Your National MHE Research Registry Form is given an ID number and your clinical questionnaire form number will be the same.
Please check Yes or No to each question, there is an area next to each question if you would like to fill in more information.
International Forms are welcomed, as long as the answers are worded in English in the field area and Yes or No answers are
simply checked.
Multiple Hereditary Exostoses (or other name used to describe this disorder).
The National MHE Research Registry Clinical Questionnaire is part of the MHE Registry. This questionnaire was developed with the
researchers and clinicians our foundation is working with. The data being collected in this questionnaire is being used as a part of
research projects into the understanding of MHE / MO / HME. Data being collected is used by the following researchers as a part
of there research:
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
This research has been approved by the Human Subjects Committee University of Antwerp.
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)
The research has been approved by the Human Subjects Committee Rizzoli Orthopaedic Institute.
These researchers are partners of the EuroBoNeT consortium, a European Commission granted Network of Excellence for
studying the pathology and genetics of bone tumors.
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.
Sarah Ziegler signed confidentiality agreement as liaison officer for the following institutions.
To read copies of these certificates
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.
Please submit the National MHE Research Registry Form before you submit this MHE Clinical Questionnaire Form. If
you have already submitted a MHE research registry registration form then you do not repeat.
This Organization strictly follows all HIPAA regulations
Note: In cases where multiple family members are to be included in the research registry, please fill out a separate forms for
each individual.
Your National MHE Research Registry Form is given an ID number and your clinical questionnaire form number will be the same.
Please check Yes or No to each question, there is an area next to each question if you would like to fill in more information.
International Forms are welcomed, as long as the answers are worded in English in the field area and Yes or No answers are
simply checked.
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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
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.
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. All online submission forms use (SSL 3.0, RC4 with 128 bit encryption (High); RSA with 1024 bit exchange) Protocol with Privacy protection. Our goal is to make this website as safe and user friendly as possible. |
| The MHE Research Foundation is a participating member organization of the United States Bone and Joint Decade, (USBJD) & the USBJD Rare Disease Patient Network |
| Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2009 The MHE Research Foundation |
| This web page was updated last on 6/21/09, 4:0O pm Eastern time |
| Written consent must be obtained to attach web pages or the files attached to this website. Please email webmaster. |
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.
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 MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
