Please fill in the online form below
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
Address 149- 34 16th Road, White stone, NY 11357
Email: sarahziegler@mheresearchfoundation.org
Toll Free Phone: 1 - 877 - 486 - 1758
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
Address 149- 34 16th Road, White stone, NY 11357
Email: sarahziegler@mheresearchfoundation.org
Toll Free Phone: 1 - 877 - 486 - 1758
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
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
| National MHE Research Registry Form |
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| |||||||||||||||||||||||||
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.
