PacNorGG

PACNORGG PUBLICATIONS

The following are educational materials developed by and made available through the Pacific Northwest Regional Genetics Group (PacNoRGG). The materials are now being hosted by the Western States Regional Genetics Network. Unless otherwise indicated, publications were last reviewed in June 2005.

Cystic Fibrosis
Question and answer format; written for people who do not read well.

• My partner and I are both carriers for cystic fibrosis (posted on 12/11/09)
• English
• Spanish
• Should I have a cystic fibrosis carrier test? (posted on 12/11/09)
• English
• Spanish
• So I have a cystic fibrosis gene, but we can’t test my partner (posted on 12/11/09)
• English
• Spanish
• So I have a cystic fibrosis gene, but my partner’s test was negative (posted on 12/11/09)
• English
• Spanish

Multiple Serum Screening (Quad Marker Test/Triple Test)

• Maternal serum marker screening: a test for pregnant women (updated: July 2009)
  Written at a fourth grade level for women of limited education.
• Multiple serum marker test: a blood screening test for any pregnant woman (updated: July 2009)
  Written at a sixth grade reading level.
• Maternal serum multiple marker screen…a fact sheet for practitioners (posted on 12/23/09)
  A flow chart outlining screening for Down syndrome, trisomy 18, and neural tube defects.

Sex Chromosome Problems Discovered through Prenatal Diagnosis
Information about prenatal testing results that indicate a change in the sex chromosomes and a description of each syndrome.

• Klinefelter syndrome (47,XXY) (posted on 12/11/09)
• English
• Spanish
• Turner syndrome (45,X) (posted on 12/11/09)
• English
• Spanish
• XXX syndrome (47,XXX) (posted on 12/11/09)
• English
• Spanish
• XYY syndrome (47,XYY) (posted on 12/11/09)
• English
• Spanish (posted on 9/18/13)

Metabolic Condition Booklets, written for parents

• Carbamyl Phosphate Synthetase Deficiency (posted on 03/11/10)
• English
• Spanish
• Glutaric Acidemia Type II (posted on 03/11/10)
• English
• Spanish
• Isovaleric Acidemia (posted on 03/11/10)
• English
• Spanish
• Ketone Utilization Disorder (Beta-Ketothiolase Deficiency)(posted on 03/11/10)
• English
• Spanish
• Medium Chain ACYL-CoA Dehydrogenase Deficiency: MCAD (posted on 03/11/10)
• English
• Spanish

Other Titles

• Chromosome Rearrangements Discovered Through Prenatal Diagnosis (posted on 12/11/09)
  Provides families with information about unusual chromosome abnormalities detected by prenatal diagnosis. Discusses inversions, translocations and markers.
• English
• Spanish


• Could It Be Genetic? (updated: July 2009)
  Outlines indications for referral for pediatric and adult genetic counseling.


• Do You Have Cancer in Your Family? (posted on 12/11/09)
  Explains why cancer genetic counseling may be helpful.


• Genetic Testing — A Fact Sheet (posted on 12/11/09)
  Outlines the issues an individual should consider prior to having a genetic test.


• Phenylketonuria and Pregnancy — Part 1: General Information (posted on 12/11/09)
  Fact sheet for providers with algorithms and resource information for maternal PKU.


• Phenylketonuria and Pregnancy — Part 2: Pregnancy Management (posted on 12/11/09)
  Fact sheet for providers with algorithms and resource information for maternal PKU.


• Testing for Huntington Disease: Making an Informed Choice (posted on 12/11/09)
  Intended to help the individual considering testing for Huntington Disease reflect on the issues involved in testing and in dealing with test results.


• Preventing Neural Tube Defects for Couples at Increased Risk (posted on 12/11/09)
  Fact sheet for women at increased risk to have a baby with an NTD.


• English
• Russian
• Spanish
• Vietnamese


• There’s No Reason to Face It Alone: Questions You May Have for Your Health Care Provider (posted on 12/11/09)
  Outlines questions a consumer might ask a health care provider about a genetic condition.
• English
• Spanish


• Why Do DNA Testing or Banking?
  A fact sheet for families; discusses the importance and rationale of why DNA banking or testing should be considered.


• Will I Have a Healthy Baby? (updated: July 2009)
  Outlines indications for referral for prenatal genetic counseling.


• You Are Not Alone: Support Networks for Genetic Conditions
  A fact sheet for consumers; explains what a genetics network is and what it can provide.

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