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Moebius Syndrome Foundation Research Registry

Welcome!

The Moebius Syndrome Foundation Research Registry is an online registry for people with Moebius Syndrome and related facial weakness disorders. It is sponsored by the Moebius Syndrome Foundation and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry will collect information from participants (or their authorized representatives) who are affected by Moebius syndrome.

What is a Patient Registry?

A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The Moebius Syndrome Foundation Research Registry serves to:

  • Provide a convenient online platform for participants (or caregivers) to self-report cases of Moebius syndrome and related disorders.
  • Develop a contact registry within the Moebius Syndrome Foundation Research Registry (e.g., to notify participants of research studies and clinical trials).
  • Evaluate the range and variability of symptoms present in individuals with Moebius syndrome to better understand the spectrum of symptoms associated with the condition and to follow the natural course of the condition over time.
  • Investigate surgical outcomes in individuals with Moebius syndrome, particularly focusing on post-operative functional improvements and long-term effects.
  • Evaluate communication needs and identify effective tools and strategies to improve communication outcomes for individuals with Moebius syndrome.
  • Assess the effectiveness of other treatments in improving symptoms of Moebius syndrome.
  • Assess the quality of life experienced by individuals with Moebius syndrome to identify areas needing improvement and inform interventions aimed at enhancing overall well-being.
  • Identify genetic and environmental factors that may lead to the development of Moebius syndrome.
  • Help the Moebius syndrome community develop recommendations and standards of care.
  • Be a case-finding resource for researchers aiding in retrospective studies, intervention outcomes, and prospective studies.

What types of data will be collected in the Moebius Syndrome Foundation Research Registry?

The Moebius Syndrome Foundation Research Registry collects data on the following topics:

  • Socio-demographics
  • Medical history, surgical history, and diagnostics
  • Effectiveness of treatments
  • Management of care
  • Quality of life

Is the data secure?

The Moebius Syndrome Foundation Research Registry follows strict government guidelines to assure patient information is protected.

The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform application server and the database are also encrypted.

As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.

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