Thank you for your interest in following the progress of the CHI Collaborative Research Network (CRN) Group and/or participating in other CHI volunteer activities this year. Anyone from the HI Community can sign-up for these activities.

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CHI Collaborative Research Network Progress

 

If you are interested in following the 2021 CHI CRN progress, please check the box below. You will receive quarterly updates on the CHI CRN and may be asked to answer questionnaires or provide feedback on the work as it is completed.

The workstreams include:

  • Defining HI/ What is HI (topics will include: What should we call the disease? How do we identify subtypes? Who has it and when do they have it?)
  • Medical and surgical treatments (What new treatments are needed? Are there new opportunities for treatment such drug repurposing, cell transplants, or gene therapy?)
  • Care Guidelines/centers of excellence (What needs to be done to increase awareness of HI care guidelines and adapt them to different clinical realities? How can we strengthen
  • Diagnostics (How can we improve diagnosis and shorten the time to diagnosis? What new technology can be developed, such as a blood spots for newborn screening, better radiological options for diagnosis, or prenatal diagnosis?)
  • Glucose monitoring (What can be done to create more accurate glucometers, especially for lows? What work needs to be done to designate devices for HI? How can we increase awareness for blood sugar as a vital sign?)
  • Genetics (How do we speed up gene identification and our understanding of mutations? How can we increase the speed of receiving genetic testing results? How do we ensure consistent access to genetic testing?)
  • Clinical trials/industry engagement (How can we develop and implement a universal clinical trial design? What is the best way to generate natural history control group data pool that would be recognized by regulatory bodies? How do we ensure patients can identify and participant in appropriate trials?)
Please add me to the CHI CRN email list:*

If you have additional expertise or relevant experience on the CHI CRN Workstreams listed above and would like to provide additional insight in one of these areas, please provide a short description of your credentials or interest.

Additional Expertise or Relevant Experience for CRN Workstreams

 

Other Volunteer Opportunities

 

In addition to the CRN, we are looking for volunteers who would like to be more involved in other CHI initiatives. Please let us know if you would like to help us in any of the following areas

You may check more than one box.

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