Att H - Program survey - Word

Attachment H--Newborn Screening PROGRAM data collection instrument

 

Form Approved
OMB No. 0920-0879
Expiration Date: 03/31/2014

Thank you for providing input as part of our effort to demonstrate the capacity and impact of state newborn screening programs. For each condition listed in the tables that follow please provide for your state: the first year of state-wide screening and the number of confirmed cases in 2009, 2010, and 2011.

Where the number of cases for a condition exceeds the largest value in the drop down menu, note the year and actual number of cases in the corresponding comments section.

1. State

State

2. Organic Acid Conditions

	Year Started Statewide Screening	# Confirmed Cases, 2009	# Confirmed Cases, 2010	# Confirmed Cases, 2011
PROP--Propionic acidemia
MUT--Methylmalonic acidemia (methylmalonyl-CoA mutase)
Cbl A,B--Methylmalonic acidemia (cobalamin disorders)
IVA--Isovaleric acidemia
3-MCC--3-Methylcrotonyl-CoA carboxylase deficiency
HMG--3-Hydroxy-3-methyglutaric aciduria
MCD--Holocarboxylase synthase deficiency
ßKT--ß-Ketothiolase deficiency
GA1--Glutaric acidemia type I

Comments about Organic Acid Conditions. Be sure to note here the year and # of cases for any condition where the # confirmed cases exceeds the drop down maximum.

Public reporting burden of this collection of information is estimated to average 38 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Information Collection Review Office, 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0920-0879).

3. Fatty Acid Oxidation Conditions

	Year Started Statewide Screening	# Confirmed Cases, 2009	# Confirmed Cases, 2010	# Confirmed Cases, 2011
CUD--Carnitine uptake defect/carnitine transport defect
MCAD--Medium-chain acyl-CoA dehydrogenase deficiency
VLCAD--Very long-chain acyl-CoA dehydrogenase deficiency
LCHAD--Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency
TFP--Trifunctional protein deficiency

Comments about Fatty Acid Oxidation Conditions. Be sure to note here the year and # of cases for any condition where the # confirmed cases exceeds the drop down maximum.

4. Amino Acid Conditions

	Year Started Statewide Screening	# Confirmed Cases, 2009	# Confirmed Cases, 2010	# Confirmed Cases, 2011
ASA--Argininosuccinic aciduria
CIT--Citrullinemia, type I
MSUD--Maple syrup urine disease
HCY--Homocystinuria
PKU--Classic phenylketonuria
TYR I--Tyrosinemia, type I

Comments about Amino Acid Conditions. Be sure to note here the year and # of cases for any condition where the # confirmed cases exceeds the drop down maximum.

5. Endocrine Disorders

	Year Started Statewide Screening	# Confirmed Cases, 2009	# Confirmed Cases, 2010	# Confirmed Cases, 2011
CH--Primary congenital hypothyroidism
CAH--Congenital adrenal hyperplasia

Comments about Endocrine Disorders. Be sure to note here the year and # of cases for any condition where the # confirmed cases exceeds the drop down maximum.

6. Hemoglobin Disorders

	Year Started Statewide Screening	# Confirmed Cases, 2009	# Confirmed Cases, 2010	# Confirmed Cases, 2011
Hb SS--S,S disease (Sickle cell anemia)
Hb S/ßTh--S, βeta-thalassemia
Hb S/C--S,C disease

Comments about Hemoglobin Disorders. Be sure to note here the year and # of cases for any condition where the # confirmed cases exceeds the drop down maximum.

7. Other Disorders

	Year Started Statewide Screening	# Confirmed Cases, 2009	# Confirmed Cases, 2010	# Confirmed Cases, 2011
BIOT--Biotinidase deficiency
CCHD--Critical congenital heart disease
CF--Cystic fibrosis
GALT--Classic galactosemia
HEAR--Hearing loss
SCID--Severe combined immunodeficiences

Comments about Other Disorders. Be sure to note here the year and # of cases for any condition where the # confirmed cases exceeds the drop down maximum.

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