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  • The International SMA Patient Registry
    the Registry as a data information resource and for recruitment of participants for research studies and clinical trials Making this connection between families and researchers is an important step in SMA research Information in this website is provided for both potential participants and potential researchers If you have any questions about the Registry please feel free to contact the Registry staff Note There are a number of upcoming Phase 1

    Original URL path: http://smaregistry.iu.edu/ (2014-10-20)
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  • The International SMA Patient Registry
    invited to join the Registry Participants are asked to complete questionnaires about the symptoms treatment medications and other experiences with SMA Visit the Participant Portal for more information on how to sign up for the Registry Participant information is stored in a secure database Researchers who are interested in studying SMA can request two types of data from the Registry de identified information and identifiable information De identified information does not contain any names or personal identifiers and can be given to researchers without having to contact Registry families Identifiable information includes information that can identify you and will never be released without getting your written permission to do so Identifiable information includes data such as names and dates of birth Some researchers may also request contact with families to obtain specific information or to request participation in a research study In these instances the Registry will contact each potential participant to ask if they are willing to share their identifiable information for a research project The Registry recognizes the importance of global collaboration Working together with researchers from all over the world is very important in the investigation of SMA In 2008 the Registry joined the group Translational Research in Europe for the Assessment and Treatment of Neuromuscular Diseases TREAT NMD in a global collaboration to further the research goals of the neuromuscular disease community TREAT NMD has developed a global database that compiles deidentified data transferred from participating registries around the world The main objective of the TREAT NMD database is to assess the feasibility of clinical trials to facilitate the planning of clinical trials and to support the enrollment of patients in clinical trials This international database will also be used to answer questions regarding the prevalence of particular neuromuscular disorders and assessing the support of other

    Original URL path: http://smaregistry.iu.edu/Registry/ (2014-10-20)
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  • The International SMA Patient Registry
    participate in the TREAT NMD global database While other questionnaires are optional we believe that they will provide information that is valuable to SMA research Informed Consent Form You will need to read and sign an informed consent form This form explains your participation in the Registry what your rights are and what you can expect as a member of the Registry The Authorization for the Release of Health Information for Genetic Research This form is sometimes referred to as a HIPAA form It allows us to collect and store medical information on you Participant Intake Questionnaire PIQ The PIQ form is fairly brief and asks basic questions about the person affected with SMA Family History Questionnaire Coming Soon This form asks questions about your family members and helps us to build a family tree with which we can easily trace the inheritance of SMA within your family Although this form is optional we believe that it provides important research information Affected Questionnaire Coming Soon This questionnaire asks more in depth questions about various symptoms treatments and experiences with SMA Although this form is optional we believe that it provides important research information about the clinical history of SMA and may provide vital information to researchers Annual Update Form Once a year you will be asked to complete this form which will allow us to update information about your family and provide a means for ensuring that we have correct contact information for you To join the Registry please use the join links to the right or at the top of the page What happens once I join the Registry By registering information with the International SMA Patient Registry you are in no way committing yourself to participate in any research project Your information simply allows us to notify you

    Original URL path: http://smaregistry.iu.edu/Participant/ (2014-10-20)
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  • The International SMA Patient Registry
    all over the world and continues to grow The Registry collects information including Demographics Family History Motor Development Diagnosis Symptoms Testing including genetic Treatments Outcomes Many other data points are collected by the Registry as well A Registry staff member can assist you in determining which variables or information might be important to your research study You can view the specific data elements that the Registry collects by visiting the Participant Portal link at the top of this page and go to the Join the Registry link Here you will be directed to a page where the forms that participants fill out can be downloaded These forms will give you a better idea of what sorts of data elements are available to researchers There is no cost to use the Registry when requesting de identified data or assistance recruiting for most surveys and non profit sponsored research For information regarding the fee schedule for recruitment assistance for industry and government sponsored clinical trials please contact Registry staff at or 866 482 0248 Researchers can request use of the Registry when they need de identified statistical data or when they need assistance recruiting participants for studies and clinical trials All research

    Original URL path: http://smaregistry.iu.edu/Researchers/ (2014-10-20)
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  • The International SMA Patient Registry
    for Standard of Care in Spinal Muscular Atrophy Prepared by SMA Advocates for families affected by SMA 2007 This document is a Family Guide to the Consensus Statement for the Standard of Care in Spinal Muscular Atrophy and was prepared by SMA Advocates for families affected by SMA This guide is meant to be a condensed and less technical version of the full Consensus Statement The full text of the

    Original URL path: http://smaregistry.iu.edu/Links/ (2014-10-20)
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  • The International SMA Patient Registry
    all of the exciting things going on at the registry 2011 Volume 4 Winter 2011 2011 Annual SMA Conference Genetic Testing for SMA Why Is It Important The International SMA Registry and Research Advancing SMA Education and Awareness Care Package Program For Children Who Have Been Recently Diagnosed With SMA 2010 Volume 3 Spring Summer 2010 Welcome Spinal Muscular Atrophy Treatment Acceleration Act Gaining Support in Congress What Would Rover

    Original URL path: http://smaregistry.iu.edu/Participant/newsletters.asp (2014-10-20)
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  • The International SMA Patient Registry
    the Disclosure of Information section below we do not attempt to use the technical information discussed in this section to identify individual visitors Active Manual Voluntary Collection Other than automatically collected technical information about your visit described above or cookies described below we may ask you to provide information voluntarily such as through forms or other manual input in order to make products and services available to you to maintain and manage our relationship with you including providing associated services or to better understand and serve your needs This information is generally retained as long as you continue to maintain a relationship with us Your providing this information is wholly voluntary However not providing the requested information or subsequently asking that the data be removed may affect our ability to deliver the products or service for which the information is needed Providing the requested information indicates your consent to the collection use and disclosure of this information as described in this notice Information we may actively collect could include the email addresses of those who communicate with us via email information volunteered by the visitor such as preferences survey information and or site registrations Cookies A cookie is a small data file that is written to your hard drive that contains information about your visit to a web page If you prefer not to receive cookies you may configure your browser to not to accept them at all or to notify and require approval before accepting new cookies Some web pages sites may not function properly if the cookies are turned off or you may have to provide the same information each time you visit those pages In order to customize the information and services offered to you our site uses cookies to record session information such as items that visitors add to their shopping cart Children This site is not directed to children under 13 years of age does not sell products or services intended for purchase by children and does not knowingly collect or store any personal information even in aggregate about children under the age of 13 We encourage parents and teachers to be involved in children s Internet explorations It is particularly important for parents to guide their children when they are asked to provide personal information online Use of Third Party Services Our web site does not utilize any types of services provided by third parties Updating Inaccurate Information In some cases we will grant visitors the ability to update or correct inaccuracies in the information that we maintain Visitors may correct inaccuracies in all information including proprietary information that we maintain Visitors can have this information corrected by sending us email at the listed address Disclosure of Information Other than sharing your information with other appropriate university personnel and units to ensure the quality functionality and security of our web site or manage your relationship with us we will not disclose personally identifiable information about your use of the site except under the following

    Original URL path: http://smaregistry.iu.edu/privacy.asp (2014-10-20)
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  • The International SMA Patient Registry
    a substitute for consulting a licensed medical professional References to any non IU or School of Medicine entity product service or source of information in this site should not be considered an endorsement either direct or implied by the IU School of Medicine or Indiana University Neither IU or IUSM is responsible for the content of any non University Web pages referenced in this Web site If you find objectional

    Original URL path: http://smaregistry.iu.edu/disclaimer.asp (2014-10-20)
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