ACT & Info Sheets for
The Kansas Newborn Screening Program has modified the following items which are included in the American College of Medical Genetics and Genomics (ACMG) Intermediate Management Guide:
- Algorithms that present an overview of the basic steps involved in determining the final diagnosis of the infant.
- ACTion (ACT) sheets that describe the short-term actions a health professional should follow in communicating with the family and determining the appropriate steps in the follow-up of the infant that has screened positive.
- Information sheets that show information on the condition, such as clinical symptoms, incidence, treatment, screening methodology, and communicating the results to the parents.
Provider Action Sheets
| Disorder Type | Conditions |
| Hemoglobinopathies | Sickle cell anemia (HbSS or HbSߺ Thalassemia) |
| Hemoglobin SC disease (HbSC)
Algorithm | ACT Sheet | Info Sheet |
|
| Hemoglobin S/beta Thalassemia (HbSß+)
Algorithm | ACT Sheet | Info Sheet |
|
| Sickle cell carrier (trait) (HbAS)
Algorithm | ACT Sheet | Info Sheet |
|
| Amino Acid Disorders | Phenylketonuria (PKU) |
| Maple Syrup Urine Disease (MSUD) | |
| Homocystinuria (HCY) | |
| Tyrosinemia (TYR) | |
| Argininosuccinic Aciduria (ASA) | |
| Citrullinemia, Type 1 (CIT)
Algorithm | ACT Sheet | Info Sheet |
|
| Fatty Acid Disorders | Medium-Chain Acyl-Coa Dehydrogenase Deficiency (MCAD) |
| Very Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCAD) | |
| Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD) | |
| Trifunctional Protein Deficiency (TFP)
Algorithm | ACT Sheet | Info Sheet |
|
| Carnitine Uptake Defect (CUD) | |
| Organic Acid Disorders | Isovaleric Acidemia (IVA) |
| Glutaric Acidemia, Type 1 (GA-I) | |
| 3-Hydroxy-3-Methylglutaric Aciduria (HMG) | |
| Holocarboxyalse Synthetase Deficiency (MCD)
Algorithm | ACT Sheet | Info Sheet |
|
| Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency) (MUT) | |
| Methylmalonic Acidemia (Cobalamin Disorders)
(Cbl A, B) Algorithm | ACT Sheet | Info Sheet |
|
| 3-Methylcrotonyl-CoA Carboxylase Deficiency (3MCC)
Algorithm | ACT Sheet | Info Sheet |
|
| Propionic Acidemia (PROP)
Algorithm | ACT Sheet | Info Sheet |
|
| Beta-Ketothiolase Deficiency (BKT)
Algorithm | ACT Sheet | Info Sheet |
|
| Other Disorders | Congenital Hypothyroidism (CH) |
| Biotinidase Deficiency (BIO) | |
| Congenital Adrenal Hyperplasia (CAH) | |
| Galactosemia (GALT) | |
| Cystic Fibrosis (CF) | |
| X-Linked Adrenoleukodystrophy (X-ALD) | |
| Severe Combined Immune Deficiency (SCID) | |
| Spinal Muscular Atrophy (SMA) | |
| Critical Congenital Heart Disease (CCHD)
Algorithm | ACT Sheet | Info Sheet |
Provider Action Sheets