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Get the free Non-Screened or Screen Negative Cystic Fibrosis Case Report Form - cdph ca

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This form is to be completed for each diagnosed Cystic Fibrosis patient not referred through California CF Newborn Screening, capturing various patient and medical information.
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How to fill out non-screened or screen negative

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How to fill out Non-Screened or Screen Negative Cystic Fibrosis Case Report Form

01
Begin by obtaining the Non-Screened or Screen Negative Cystic Fibrosis Case Report Form from the appropriate source.
02
Fill in the patient's demographic information, including name, date of birth, and contact details.
03
Record the medical history relevant to cystic fibrosis, including any symptoms experienced by the patient.
04
Include information on family history of cystic fibrosis or related conditions.
05
Document the patient's mucus gland function results, if available.
06
State the reasons for screening or not screening for cystic fibrosis.
07
Provide details regarding test results from any genetic mutations or newborn screenings performed.
08
Include physician information, such as name, specialty, and contact details.
09
Review the form for completeness and accuracy before submission.
10
Submit the completed form to the designated health authority or research organization.

Who needs Non-Screened or Screen Negative Cystic Fibrosis Case Report Form?

01
The Non-Screened or Screen Negative Cystic Fibrosis Case Report Form is needed by healthcare providers who are assessing patients for cystic fibrosis, researchers studying the disease, and public health officials monitoring cystic fibrosis cases in the population.
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Chest or abdominal magnetic resonance imaging (MRI): These exams use a powerful magnet, radio waves and a computer to produce detailed pictures of the lungs and digestive tract. Although chest x-ray or CT is used more commonly for this disease, MRI can help assess damage caused by cystic fibrosis.
Common Medical Tests for Cystic Fibrosis Diagnosis and Monitoring Sweat Testing. People with CF have a higher concentration of salt in their sweat. Genetic Testing. Pancreatic Function Testing. Bloodwork. Sputum Cultures. Oral Glucose Tolerance Test. Imaging. Pulmonary Function Testing.
The Mutation Analysis Program (MAP), funded by the Cystic Fibrosis Foundation and administered by The Johns Hopkins Genomics DNA Diagnostic Laboratory (JHGDDL), is a free and confidential genetic testing program for people with a confirmed or strongly suspected diagnosis of cystic fibrosis.
All newborns in the United States are tested for cystic fibrosis. Newborn screening identifies more than half of cystic fibrosis cases. However, many people born before 2010 have not been screened. Newborn screening for cystic fibrosis is performed during a baby's first two to three days of life.
The sweat test is considered the “gold standard” for the diagnosis of CF. Many hospitals perform screening sweat tests that measure skin conductivity. However, quantitative pilocarpine iontophoresis, which measures the sweat chloride concentration is used for diagnosis.

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The Non-Screened or Screen Negative Cystic Fibrosis Case Report Form is a document used to collect and report data on individuals diagnosed with cystic fibrosis who were not identified through newborn screening or tested negative for cystic fibrosis during screening.
Healthcare providers, including physicians and clinics that diagnose cystic fibrosis in patients who were not identified through newborn screening or who tested negative, are required to file this report.
To fill out the form, healthcare providers should gather necessary patient information, including demographics, clinical data, diagnostic results related to cystic fibrosis, and any other pertinent health information before completing the designated sections of the form.
The purpose of the form is to ensure proper documentation of cystic fibrosis cases that were not detected through standard newborn screening processes, enabling better tracking and understanding of the disease's prevalence and characteristics.
The form must report the patient's demographic information, clinical assessment findings, details of the cystic fibrosis diagnosis, treatment plans, and any laboratory results confirming the diagnosis.
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