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Suggested Teaching Approaches for
                                                                    Newborn Screening

Format 1: Point of Care (~ 5 min)
Overview                    Resources available at time of patient contact, to help learner care for patient and advance own knowledge of the topic.

                                   
Suggested                              GeneticTools “At-A-Glance” on newborn screening, www.genetictools.org/[link here]
educational material
                                      GeneticTools overview of newborn screening and public health, http://www.genetests.org/servlet/access?
                                       id=8888892&key=t0jmQ19e2e1jp&fcn=y&fw=pqY8&filename=/tools/concepts/screening.html
                                      GeneTests overview of newborn screening, http://genetests.org/servlet/access?
                                       id=8888891&key=rQfGzSggrmqxI&fcn=y&fw=3MwK&filename=/concepts/primer/primerusesof.html#newborn
                                            o    Click on the “Clinical Example” links for short cases

                                      Next steps after a positive newborn screening test – Fact Sheets on specific conditions - American Academy of Pediatrics [4-22-06 -
                                       should be posted on the AAP web site, http://www.aap.org within a month].
                                      Fact sheets for professionals and parents about metabolic conditions detected using tandem mass spectrometry –
                                       http://www.newbornscreening.info

Mini- topics                  [Case requiring immendiate follow-up]
Addressing common             [Clinical suspician of condition detected by NBS in a bay or child who had NBS]
questions in clinical
precepting.

Suggested approach            Have connection to Internet available. Choose a condition detectable by newborn screening. Use resources above to identify an information
                              source about that condition that can be read or skimmed in 5 minutes or less. unified access point with direct links to web-based resources
                              available in the clinic precepting environment.

ACGME/RRC                     Do these apply to topics covered in precepting?
requirements

Format 2: Morning Report (~ 20 min.)

Overview                      Brief informal discussion of case-based materials presenting major points regarding newborn screening. Could be led by faculty or chief/senior
                              resident. Would a program ever bring in a CGC or a medical geneticist to do this?

Suggested                     GeneticTools (www.genetictools.org) teaching cases. Each case includes key points, learning objectives, red flags, and descriptions of clinical care
educational material          issues; risk assessment; genetic counseling and testing; interventions; ethical, legal, social, and cultural issues; and resources.
                                      Cases about responding to positive newborn screening results:
                                            o    Case 10: Not passing a newborn hearing screen, http://www.genetests.org/servlet/access?
                                                 id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=2XNz&filename=/tools/cases/hearingLoss-10/index.html
                                            o    Case 34: Sickle cell disease detected by newborn screening, http://www.genetests.org/servlet/access?
                                                 id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=X9TK&filename=/tools/cases/sickle-34/index.html
                                            o    Case 35: Sickle cell trait detected by newborn screening. http://www.genetests.org/servlet/access?
                                                 id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=hDo-&filename=/tools/cases/sickle-35/index.html


Revised 3/31/20064/24/2006                                                                                                                            Page 1 of 4
Kerry Silvey, MA, CGC
Children’s Development & Rehabilitation Center, OHSU
Suggested Teaching Approaches for
                                                                    Newborn Screening

                                      Cases about other newborn screening issues:
                                            o    Case 11: Older sibling of a baby diagnosed with hearing loss by newborn screening subsequently diagnosed with hearing loss,
                                                 http://www.genetests.org/servlet/access?
                                                 id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=6lvI&filename=/tools/cases/hearingLoss-11/index.html
                                            o    Case 20: Family asked to participate in a research study about detecting Type 1 diabetes mellitus by newborn screening, http://
                                                 www.genetests.org/servlet/access?
                                                 id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=LRCv&filename=/tools/cases/diabetesType2-20/index.html
                                      Fact sheets on next steps after a positive newborn screening test - American Academy of Pediatrics [4-22-06 - should be posted on the
                                       AAP web site, http://www.aap.org within a month].
                                      Fact sheets for professionals and parents about metabolic conditions detected using tandem mass spectrometry –
                                       http://www.newbornscreening.info

Suggested pre-                All attendees: Review your state’s newborn screening and Early Hearing Loss Detected and Intervention (EHDI) websites. Familiarize yourself with
reading                       your state’s resources for health care providers, parents, and who you can contact with questions about a patient’s newborn screening results.
                              Links to each states’ NBS program are on http://genes-r-us.uthscsa.edu.


                              Discussion leader: Same as for participants.

Suggested approach            Informal discussion of case-based materials presenting major points regarding newborn screening. Could be led by faculty, chief/senior resident,
                              or in-house metabolic geneticist, pediatric endocrinologist, or pediatric hematologist. Some of the 5-minute mini-topics suggested for Point of Care
                              teaching (above) can be expanded, modified, or combined to work in a 20-minute teaching discussion. Add a 1 or 2-sentence case at the start to
                              introduce the topic, and spend more time asking questions and discussing each point. Examples below:
                                   




ACMG/RRC                      ??
requirements

Evaluation                    ??

Format 3: Noon Conference (~ 1 hour)

Overview                                        Formal lecture-style presentation of information on newborn screening.

Suggested educational material                  [Still looking for the perfect resource]

Suggested pre- reading                          ?? Review your state’s newborn screening website. Familiarize yourself with your state’s resources for health care providers,
                                                parents, and who you can contact with questions about a patient’s newborn screening results. Links to each states’ NBS program
                                                are on http://genes-r-us.uthscsa.edu.

Suggested approach                              Formal lecture-style presentation of information on newborn screening. Your state’s newborn screening program follow-up
                                                contact should be able to connect you with metabolic geneticists, pediatric endocrinologists, pediatric hematologists, and/or

Revised 3/31/20064/24/2006                                                                                                                           Page 2 of 4
Kerry Silvey, MA, CGC
Children’s Development & Rehabilitation Center, OHSU
Suggested Teaching Approaches for
                                                                   Newborn Screening

                                                genetic counselors to speaker at a noon conference. Links to each states’ NBS programs are on http://genes-r-us.uthscsa.edu.

ACGME/RRC requirements                          ??

Evaluation                                      ??




Revised 3/31/20064/24/2006                                                                                                                        Page 3 of 4
Kerry Silvey, MA, CGC
Children’s Development & Rehabilitation Center, OHSU
Suggested Teaching Approaches for
                                                                     Newborn Screening


Format 4: Self- Directed Learning

Overview                                        Material available for learner self-study, via the Internet.

                                                       
Suggested educational material                             AAFP 2005 Annual Clinical Focus: Genomics—video on newborn screening, http://www.aafp.org/x37667.xml
                                                               o   CME series produced by the American Academy of Family Physicians
                                                               o   45-minute video viewed directly from the Internet (NB: requires high-speed Internet access)
                                                               o   Uses a case example of a newborn diagnosed with cystic fibrosis through newborn screening.
                                                               o   Discusses implications of using tandem mass spectrometry for newborn screening.

                                                          March of Dimes Website, www.marchofdimes.com
                                                               o   Website has a separate section for Professionals & Researchers; also patient education pages
                                                               o   Use Search function to find content of interest
                                                               o   Includes pages on “What Providers Can Do,” links to each state’s newborn screening program

Suggested pre- reading                          ??

Suggested approach                              ??Material available for learner self-study, via the Internet.

ACGME/RRC requirements                          ??

Evaluation                                      ??

Other Resources (more detail)

                                                National Newborn Screening & Genetics Resource Center, http://genes- r-us.uthscsa.edu/index.htm




Revised 3/31/20064/24/2006                                                                                                                          Page 4 of 4
Kerry Silvey, MA, CGC
Children’s Development & Rehabilitation Center, OHSU

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Suggested Teaching Approaches For Nbs 4 24 06 Ks

  • 1. Suggested Teaching Approaches for Newborn Screening Format 1: Point of Care (~ 5 min) Overview Resources available at time of patient contact, to help learner care for patient and advance own knowledge of the topic.  Suggested GeneticTools “At-A-Glance” on newborn screening, www.genetictools.org/[link here] educational material  GeneticTools overview of newborn screening and public health, http://www.genetests.org/servlet/access? id=8888892&key=t0jmQ19e2e1jp&fcn=y&fw=pqY8&filename=/tools/concepts/screening.html  GeneTests overview of newborn screening, http://genetests.org/servlet/access? id=8888891&key=rQfGzSggrmqxI&fcn=y&fw=3MwK&filename=/concepts/primer/primerusesof.html#newborn o Click on the “Clinical Example” links for short cases  Next steps after a positive newborn screening test – Fact Sheets on specific conditions - American Academy of Pediatrics [4-22-06 - should be posted on the AAP web site, http://www.aap.org within a month].  Fact sheets for professionals and parents about metabolic conditions detected using tandem mass spectrometry – http://www.newbornscreening.info Mini- topics [Case requiring immendiate follow-up] Addressing common [Clinical suspician of condition detected by NBS in a bay or child who had NBS] questions in clinical precepting. Suggested approach Have connection to Internet available. Choose a condition detectable by newborn screening. Use resources above to identify an information source about that condition that can be read or skimmed in 5 minutes or less. unified access point with direct links to web-based resources available in the clinic precepting environment. ACGME/RRC Do these apply to topics covered in precepting? requirements Format 2: Morning Report (~ 20 min.) Overview Brief informal discussion of case-based materials presenting major points regarding newborn screening. Could be led by faculty or chief/senior resident. Would a program ever bring in a CGC or a medical geneticist to do this? Suggested GeneticTools (www.genetictools.org) teaching cases. Each case includes key points, learning objectives, red flags, and descriptions of clinical care educational material issues; risk assessment; genetic counseling and testing; interventions; ethical, legal, social, and cultural issues; and resources.  Cases about responding to positive newborn screening results: o Case 10: Not passing a newborn hearing screen, http://www.genetests.org/servlet/access? id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=2XNz&filename=/tools/cases/hearingLoss-10/index.html o Case 34: Sickle cell disease detected by newborn screening, http://www.genetests.org/servlet/access? id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=X9TK&filename=/tools/cases/sickle-34/index.html o Case 35: Sickle cell trait detected by newborn screening. http://www.genetests.org/servlet/access? id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=hDo-&filename=/tools/cases/sickle-35/index.html Revised 3/31/20064/24/2006 Page 1 of 4 Kerry Silvey, MA, CGC Children’s Development & Rehabilitation Center, OHSU
  • 2. Suggested Teaching Approaches for Newborn Screening  Cases about other newborn screening issues: o Case 11: Older sibling of a baby diagnosed with hearing loss by newborn screening subsequently diagnosed with hearing loss, http://www.genetests.org/servlet/access? id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=6lvI&filename=/tools/cases/hearingLoss-11/index.html o Case 20: Family asked to participate in a research study about detecting Type 1 diabetes mellitus by newborn screening, http:// www.genetests.org/servlet/access? id=8888892&key=ZDwdXBfuvv8tu&fcn=y&fw=LRCv&filename=/tools/cases/diabetesType2-20/index.html  Fact sheets on next steps after a positive newborn screening test - American Academy of Pediatrics [4-22-06 - should be posted on the AAP web site, http://www.aap.org within a month].  Fact sheets for professionals and parents about metabolic conditions detected using tandem mass spectrometry – http://www.newbornscreening.info Suggested pre- All attendees: Review your state’s newborn screening and Early Hearing Loss Detected and Intervention (EHDI) websites. Familiarize yourself with reading your state’s resources for health care providers, parents, and who you can contact with questions about a patient’s newborn screening results. Links to each states’ NBS program are on http://genes-r-us.uthscsa.edu. Discussion leader: Same as for participants. Suggested approach Informal discussion of case-based materials presenting major points regarding newborn screening. Could be led by faculty, chief/senior resident, or in-house metabolic geneticist, pediatric endocrinologist, or pediatric hematologist. Some of the 5-minute mini-topics suggested for Point of Care teaching (above) can be expanded, modified, or combined to work in a 20-minute teaching discussion. Add a 1 or 2-sentence case at the start to introduce the topic, and spend more time asking questions and discussing each point. Examples below:  ACMG/RRC ?? requirements Evaluation ?? Format 3: Noon Conference (~ 1 hour) Overview Formal lecture-style presentation of information on newborn screening. Suggested educational material [Still looking for the perfect resource] Suggested pre- reading ?? Review your state’s newborn screening website. Familiarize yourself with your state’s resources for health care providers, parents, and who you can contact with questions about a patient’s newborn screening results. Links to each states’ NBS program are on http://genes-r-us.uthscsa.edu. Suggested approach Formal lecture-style presentation of information on newborn screening. Your state’s newborn screening program follow-up contact should be able to connect you with metabolic geneticists, pediatric endocrinologists, pediatric hematologists, and/or Revised 3/31/20064/24/2006 Page 2 of 4 Kerry Silvey, MA, CGC Children’s Development & Rehabilitation Center, OHSU
  • 3. Suggested Teaching Approaches for Newborn Screening genetic counselors to speaker at a noon conference. Links to each states’ NBS programs are on http://genes-r-us.uthscsa.edu. ACGME/RRC requirements ?? Evaluation ?? Revised 3/31/20064/24/2006 Page 3 of 4 Kerry Silvey, MA, CGC Children’s Development & Rehabilitation Center, OHSU
  • 4. Suggested Teaching Approaches for Newborn Screening Format 4: Self- Directed Learning Overview Material available for learner self-study, via the Internet.  Suggested educational material AAFP 2005 Annual Clinical Focus: Genomics—video on newborn screening, http://www.aafp.org/x37667.xml o CME series produced by the American Academy of Family Physicians o 45-minute video viewed directly from the Internet (NB: requires high-speed Internet access) o Uses a case example of a newborn diagnosed with cystic fibrosis through newborn screening. o Discusses implications of using tandem mass spectrometry for newborn screening.  March of Dimes Website, www.marchofdimes.com o Website has a separate section for Professionals & Researchers; also patient education pages o Use Search function to find content of interest o Includes pages on “What Providers Can Do,” links to each state’s newborn screening program Suggested pre- reading ?? Suggested approach ??Material available for learner self-study, via the Internet. ACGME/RRC requirements ?? Evaluation ?? Other Resources (more detail) National Newborn Screening & Genetics Resource Center, http://genes- r-us.uthscsa.edu/index.htm Revised 3/31/20064/24/2006 Page 4 of 4 Kerry Silvey, MA, CGC Children’s Development & Rehabilitation Center, OHSU