Rett Research Ready - Study Data Collection - International Rett Syndrome Foundation

Rett Research Ready - Study Data Collection

The International Rett Syndrome Foundation is committed to connecting trial sponsors and volunteers to advance our Rett research agenda. As part of the Rett Research Ready™ program, we offer myRett Trial Finder, an easy-to-use and up-to-date online resource where families and others can search for, and connect to, relevant research opportunities. Our goal is to include all studies related to Rett syndrome – not only clinical trials and studies that are registered with ClinicalTrials.gov.

To that end, we invite you to share information for IRB-approved Rett research for which you would like to recruit volunteers. Once complete and approved by IRSF’s Chief Science Officer, we will include your details about your study in myRett Trial Finder. Thank you!
General Information
ClinicalTrial.gov identifier (NCT ID):
Full title of study/survey:*
Please provide the study/survey overview:*
Please provide the detailed study/survey description. You may upload a file below.
Study/survey description:
Max. file size: 10 MB.
Limit 10MB
Please describe the study/survey in commonly understood terms (roughly an 8th grade literacy level):
Contact Person
Used only by International Rett Syndrome Foundation staff to clarify or coordinate information.
Contact person:*
First name Last name
Contact Person Email:*
Contact Person Phone:*
IRB Approval
Is the study or survey IRB approved?
Please provide name of the IRB that approved the study, as well as the approval date:
Study start date:
Study end date:
Volunteer Information
Listing status:
Study/survey enroll volunteers who are:
Minimum age of study/survey participant:
Maximum age of study/survey participant:
Diagnosis(-es)/condition(s):
- Select All
- Rett syndrome
- Rett syndrome, preserved speech variety
- Rett syndrome, congenital variety
- Rett syndrome, atypical, Cdkl5-related
Eligibility Criteria
Eligibility criteria (key inclusion/exclusion criteria):
Additional conditions or keywords:
Are potential participants allowed to be on medications?
Length of time needed to be stable:
Any exclusionary medications:
Recruitment Location
Will participants be recruited from the US only or internationally?
Specify countries:
Ctrl or Shift Click to select multiple.
Is there reimbursement for travel expenses?
If you answered yes to providing travel reimbursement, please include the reimbursement request process below.
Participation Procedure
If the individual qualifies and decides to be in this research study, they will:
If the individual qualifies and decides to be in this research study, how many visits will they participate in?
If the individual qualifies and decides to be in this research study, how long will their participation in the study last?
Please name and describe assessments, surveys, tests, procedures, etc. that will be used in the study. To the extent they are available and it is possible to share in confidence with Rettysyndrome.org, please upload finalized instruments.
Instruments that will be used in the study:
Drop files here or

Max. file size: 10 MB.
Limit 10MB
Please describe the mechanisms and processes you have in place to hear feedback from Rett families about study design and their experiences as study volunteers. How do you prefer to receive to feedback that Rettsyndrome.org hears from the community, whether formal or informal, individual or collective? Be sure to include a point of contact and their preferred contact information if different than the person completing this form.
Benefits and Risks
What are the anticipated benefits to the research participant or the community?
What are the potential risks to the study participant in this study?
File Upload
Please upload any recruitment materials, posters, or other informational items related to the study:
Drop files here or

Max. file size: 10 MB.
PDF version is preferred – limit 10MB
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Email
This field is for validation purposes and should be left unchanged.