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) Algorithm | ACT Sheet | Info Sheet |
| 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) | |
| HEAR
Algorithm | ACT Sheet | Info Sheet |
|
| Severe Combined Immune Deficiency (SCID) | |
| Spinal Muscular Atrophy (SMA) | |
| Critical Congenital Heart Disease (CCHD)
Algorithm | ACT Sheet | Info Sheet |
Provider Action Sheets
|
Disorder Type |
Conditions |
|---|---|
|
Hemoglobinopathies |
|
|
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
|
|
|
Other Disorders |
Congenital Hypothyroidism (CH)
|
|
Biotinidase Deficiency (BIO)
|
|
|
Congenital Adrenal Hyperplasia (CAH)
|
|
|
Galactosemia (GALT)
|
|
|
Cystic Fibrosis (CF)
|
|
|
HEAR
Algorithm | ACT Sheet | Info Sheet
|
|
|
Severe Combined Immune Deficiency (SCID)
|
|
|
Spinal Muscular Atrophy (SMA)
|
|
|
Critical Congenital Heart Defect (CCHD)
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
|
Provider Action Sheets
Hemoglobinopathies
- Sickle cell anemia (HbSS or HbSߺ Thalassemia) Algorithm | ACT Sheet | Info Sheet
-
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
Other Disorders
-
HEAR Algorithm | ACT Sheet | Info Sheet
-
Critical Congenital Heart Defect (CCHD) Algorithm | ACT Sheet | Info Sheet
Amino Acid Disorders
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Fatty Acid Disorders
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Organic Acid Disorders
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