Please fill in the online form below scroll down to the bottom of page.
The National MHE Research Registry was formed to create a national listing of people diagnosed with Multiple Hereditary
Exostoses (or other name 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 any research will cost me nothing.
The registry serves to provide information on current research, details on what is involved in participation and both assistance
and support to participating families throughout the entire research process.
In order to be insured of informed consent, and to make sure that families have all of the necessary information needed to make
the decision that will be right for them, the MHE Research Registry provides explanations in layman's terms.
The National MHE Research Registry was formed to create a national listing of people diagnosed with Multiple Hereditary
Exostoses (or other name 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 any research will cost me nothing.
The registry serves to provide information on current research, details on what is involved in participation and both assistance
and support to participating families throughout the entire research process.
In order to be insured of informed consent, and to make sure that families have all of the necessary information needed to make
the decision that will be right for them, the MHE Research Registry provides explanations in layman's terms.
This Organization strictly follows all HIPAA regulations
Note: In cases where multiple family members are to be included in the registry, please fill out a separate form for
each individual.
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.
I understand that 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...) will remain with Sarah Ziegler and give her consent to release this
information to Researchers where Principle Researcher is indicated next to the researchers name in the registry research
projects and that this information will be located in a secure date base with no Internet access.
Confidentiality and Security:
I been informed that Sarah Ziegler has signed a legally binding confidentiality agreement.
These forms are printed and saved to an external flash drive, all on line data is destroyed for security reasons.
All information contained in 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.
Off line data base log in data password, Sarah Ziegler is the only person who knows this pass word, the pass word is
written down and locked in a fire retardant safe.
If at any time in the future something should happen to Sarah Ziegler that prevents her from preforming her position, all forms
of data that have been collected will be turned over to the legal counsel of this organization
Craig A. Eaton Esquire President of the MHE Research Foundation.
I understand that the Researcher(s) or Clinicians will not release any personal identification information. Information provided
to researchers by the National MHE Research Registry will be analyzed in all laboratories by ID number only. 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 / results of this study may be disclosed in a scientific paper or presentation.
Results of research studies will not be available to individual participants. However, results of these studies may be published in
research journals that will be made available to the MHE Research Registry, health care providers, and participating families.
I have the right to withdraw my name from this registry at any time, upon written request sent by email or US Mail to:
Sarah Ziegler, Executive Director, The National HE Research Registry
255 Everina St, West Palm Beach, Florida, 33401
Email: sarahziegler@mheresearchfoundation.org
Phone: 561-315-9149
each individual.
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.
I understand that 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...) will remain with Sarah Ziegler and give her consent to release this
information to Researchers where Principle Researcher is indicated next to the researchers name in the registry research
projects and that this information will be located in a secure date base with no Internet access.
Confidentiality and Security:
I been informed that Sarah Ziegler has signed a legally binding confidentiality agreement.
These forms are printed and saved to an external flash drive, all on line data is destroyed for security reasons.
All information contained in 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.
Off line data base log in data password, Sarah Ziegler is the only person who knows this pass word, the pass word is
written down and locked in a fire retardant safe.
If at any time in the future something should happen to Sarah Ziegler that prevents her from preforming her position, all forms
of data that have been collected will be turned over to the legal counsel of this organization
Craig A. Eaton Esquire President of the MHE Research Foundation.
I understand that the Researcher(s) or Clinicians will not release any personal identification information. Information provided
to researchers by the National MHE Research Registry will be analyzed in all laboratories by ID number only. 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 / results of this study may be disclosed in a scientific paper or presentation.
Results of research studies will not be available to individual participants. However, results of these studies may be published in
research journals that will be made available to the MHE Research Registry, health care providers, and participating families.
I have the right to withdraw my name from this registry at any time, upon written request sent by email or US Mail to:
Sarah Ziegler, Executive Director, The National HE Research Registry
255 Everina St, West Palm Beach, Florida, 33401
Email: sarahziegler@mheresearchfoundation.org
Phone: 561-315-9149
Hard Copy only if you need to mail
You do not need to fill out both
You do not need to fill out both
This registry 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/mherf_reg.html
RSA with 1024 bit exchange. If you have any trouble, viewing this form please click this following link
www.mheresearchfoundation.org/ssl/mherf_reg.html
| National MHE Research Registry Form |
Written consent must be obtained to attach web pages or the files attached to this website, please email the webmaster. Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2014 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. This web page was updated last on 3/16/14, 12:0O 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
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
| 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 AES 256 bit encryption (High); RSA 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/Initiative, (USBJD/I) & the USBJD/I Rare Bone Disease Patient Network NBHA National Bone Health Alliance |
The MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Wings of HOPE as we REACH for the CURE to Multiple Hereditary Exostoses Syndrome Multiple Osteochondroma Syndrome |