Newborn Screening: New Conditions Stakeholder input 2020
The Colorado Newborn Screening Program is seeking feedback from Colorado residents, stakeholders and interested parties regarding the appropriateness of adding new conditions to our screening panel. The three conditions under consideration for addition are as follows:
· Pompe Disease
· Mucopolysaccharidosis Type 1 (MPS-1)
· X-linked Adrenoleukodystrophy (X-ALD)
Any changes to the composition of the program’s panels must be approved by the Colorado Board of Health (COBoH) through the board’s public rulemaking process. An important part of the rulemaking process is soliciting and documenting feedback from the public. The survey below will serve as a key data collection tool for the stakeholder engagement process and includes questions as well as space for open ended feedback for each condition under consideration.
In the survey, you are asked to provide information about yourself and your relation to the Colorado Newborn Screening Program. We are collecting this information, so that we can provide details regarding our stakeholder engagement process to the COBoH. We will be monitoring responses as they are submitted, so that questions and concerns identified through stakeholder feedback are addressed efficiently at public meetings occurring throughout the first half of 2019. Any email address submitted through the survey will be added to our distribution list for communication related to this process.
Please list your name
Please list your connection to the Newborn Screening Community (check all that apply).
Parent or guardian of a child with a false-positive screen result
Patient or family member of a child with a condition currently on the Colorado Newborn Screening panel
Patient or family member of a child with a condition NOT currently on the Colorado Newborn Screening panel
Parent or guardian (with normal test results or no experience with Newborn screening)
Specialty Care Physician
Primary Care Physician
Representative of a patient advocacy group
Please identify your Colorado county of residence.
Please identify your insurance status.
Should Pompe Disease be added to the Colorado Newborn Screening panel?
Feedback on adding Pompe Disease to the Colorado Newborn Screening Panel
Should Mucopolysaccharidosis Type I (MPS-1) be added to the Colorado Newborn Screening panel?
Feedback on adding Mucopolysaccharidosis Type I (MPS-I) to the Colorado Newborn Screening Panel
Should X-linked Adrenoleukodystrophy (X-ALD) be added to the Colorado Newborn Screening panel?
Feedback on adding X-linked Adrenoleukodystrophy (X-ALD) to the Colorado Newborn Screening Panel
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This form was created inside of State.co.us Executive Branch.