Study Title: Ataxia Center Newsletter

Principal Investigator: Dr. Jeremy Schmahmann, MD

What is the purpose of this newsletter? The purpose of this newsletter is to provide you and your family with the latest information about ataxia from MGH. You will receive a monthly newsletter that provides timely clinical updates and educational resources, and shares information about clinical trials and research studies that you may be interested in learning more about. In order to receive this newsletter, we ask that you provide your email address. Afterward, we ask optional questions such as demographic information and diagnosis so that we can provide you with additional information that is relevant to your specific type of ataxia. While our focus is on patients and family members that we see in the MGH Ataxia Center, the information provided in the newsletter will be relevant to other families, so please feel free to forward or share.

  • The total time you are expected to spend completing the survey will be less than 5 minutes.
  • If you agree to participate in this newsletter, we will send you a monthly newsletter which contains clinical, educational, and research information. You may receive additional newsletter updates if there are time sensitive happenings we would like to make you aware of.
  • Your participation is voluntary and can stop at any time by unsubscribing from the newsletter.
  • Deciding not to participate won't affect medical care you receive at Partners now or in the future, or any benefits you receive now or have a right to receive.

There is no sponsor of this research study. You are being asked to participate because you have a diagnosis of ataxia, are a family member of someone with ataxia, or are interested in hearing about news from the Ataxia Center at MGH. We estimate that up to 5000 people will participate in this study.

What data will be collected? There is some sensitive information that may be collected related to you or your family member's diagnosis of ataxia. If you are a patient at MGH, we may also collect some information from your medical record at MGH about your previous care related to ataxia. This information will enable us to tailor the updates we send to you. The data collected in this survey will only be available to study staff in the MGH Ataxia Center. Your de-identified information (that is, data not containing your name, date of birth, or any other identifier) may be used or shared with other researchers without your additional informed consent. The data collected from this survey will not be used in clinical care, nor will it be stored in your medical record.

What are the risks involved with this newsletter? This is considered a minimally risky study. As with all studies conducted online, there is a minor risk of security breach. By agreeing to participate in this newsletter, you are agreeing to receive unencrypted e-mails from the Ataxia Center, which are not secure. None of the newsletters will reveal any identifiable information about you to any individual, nor will they contain sensitive information about you, such as your name or date of birth. We assure you that only certified staff will have access to your questionnaire responses, and we will store all data securely in accordance with Mass General Brigham's HIPAA and data security standards.

Who do I contact if I have questions? Dr. Jeremy Schmahmann, M.D., is the person in charge of this newsletter. You can contact him at 617-726-3216. If you have questions about the survey or about being contacted for future studies, please call Nicole Eklund at 617-726-7909.

If you’d like to speak to someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Partners Human Research Committee at (857) 282-1900.

We are required by the Health Insurance Portability and Accountability Act (HIPAA) to protect the privacy of health information obtained for research. This is an abbreviated notice, and does not describe all details of this requirement. During this study, identifiable information about you or your health will be collected and shared with the researchers conducting the research. In general, under federal law, identifiable health information is private. However, there are exceptions to this rule. In some cases, others may see your identifiable health information for purposes of research oversight, quality control, public health and safety, or law enforcement. We share your health information only when we must, and we ask anyone who receives it from us to protect your privacy.

Version date: 08/31/2021

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