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CHARGE research and CHD7 research help us understand the syndrome, its features and management.

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Research at Conference

Deadline for submitting Conference Research information:  February 15, 2017 send to meg@chargesyndrome.org.

Every International CHARGE Syndrome Conference presents a unique opportunity for research.  At past conferences, we have had many people who wish to conduct research at conference.  In order to accommodate as many researchers as possible, we have formalized the process. We know your plans/protocols/IRB may not be completed – send what you have. If you MAY wish to conduct research at the 2017 Conference, send the following information.

Submit a proposal by the Call for Presentations deadline of 1/31/15.  This proposal should include be submitted as a Microsoft Word Document (Arial, 12 point font with 1” margins) and include the following items in the order listed:

  1. Name as you wish it to appear in the program (Example: John Smith, PhD.)
  2. Institutional, professional, or business affiliation, if any
  3. Contact Info: Full Mailing Address, Email address, Telephone Number
  4. Professional Bio (please keep to approximately 1000 characters) — how would you like yourself identified to this group? Please tell us a bit about yourself and your connection
  5. Brief description of the rationale and goals of the research [NOTE: you must provide copy of your IRB approval (or equivalent) prior to Conference.  IRB approval does not need to be complete to submit a proposal]
  6. Information on appropriate participants.  Some examples might include
    1. General target participants, such as
      1. Age (e.g. older children)
      2. Parameters (e.g. with balance problems or everyone)
    2. Type of research, such as
      1. Questionnaires
      2. Sample collection
      3. Assessment, examination or testing of child or parents
    3. Estimate of how many participants you would like
  7. How the research will be conducted at conference.  For example
    1. Will potential participants need to be contacted prior to conference
    2. Timing – will research happen throughout conference or at specific times
    3. Will there be Questionnaires to complete – on their own or with an interviewer
    4. Will you need to sign families up for interview/ test
    5. Will interview to take place in hotel room, lobby, etc.

We strongly encourage all researchers to work with the CSCDP database to collect diagnostic and basic clinical information.  This reduces the burden on families who are asked to provide this information over and over again. If any special accommodations are needed (e.g. place to assess children), you must contact us to determine if it is feasible. Proposals will be evaluated as appropriate by the Executive Committee (EC) Scientific Advisory Board (SAB) and/or Research Committee (RC).

Deadline for initial Research proposal submission: February 15, 2017
Meg will be in touch in the spring to confirm IRB status and ask for descriptions to provide to potential research participants.

2017 CHARGE Syndrome Conference Research Proposal – Template
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Learn more about what the CHARGE Foundation has to offer researchers by using the links on the left, or below for mobile devices.