MPS I Newborn Screening Educational Meeting


Wednesday, September 25th to Friday, September 27th, 2019


The Graduate Hotel in Minneapolis, Minnesota

Meeting Description:

As newborn screening for MPS I becomes more broadly available throughout the United States and internationally, numerous issues have emerged that will be discussed.  These include laboratory challenges in methodology, false negatives/pseudoalleles, and monitoring. In addition, as therapeutic decisions depend on correctly establishing a phenotype, how the genotype, imaging in the neonatal period and biomarkers may be utilized to achieve this is not yet clear. Also of importance is providing timely, accurate information regarding the disease and its implications to the families as well as their providers.  These topics will be a focus of this meeting, as well as how collaborative efforts might be initiated to best gather and utilize the data generated.

We believe this first conference of its type will be of interest to those performing newborn screening testing, geneticists, genetic counselors, physicians, nurses and other health care personnel involved in the care of these patients.  We would also expect industry, advocacy groups and families to benefit from the discussion of these issues.


Registration Rates

Physician: $150

Other Healthcare Professionals: $100
***Nurses, Genetic Counselors, Public Health Professionals, etc.***

Residents / Fellows / Students: Free

Medical Industry Professionals: $250

*Families and advocacy group members are welcome to attend this meeting. Please contact Emily Kukacka at to receive a coupon code for a discounted rate. 

Registration includes 2 breakfasts, 2 lunches, a working dinner and light refreshments during breaks

Printed materials cannot be guaranteed for onsite/walk-in registants. To ensure you will receive all course materials before the start of the activity, please register in advance. Registration will close Wedneday, September 18th, 2019.

Register Now!

Photo Release

The UMN Medical School Communitions may take photos/vidoes of participants and these may appear in promotional materials in the future. Your attendance constitutes as your permission and consent for photography and video subsequent usage. 


Wednesday, September 25th, 2019

5:30 to 8:00 pm Dinner and Family Perspective Presentation led by Mark Dant          


Thursday, September 26th, 2019

7:00 to 7:50 am  Breakfast
7:50 to 10:00am

Session 1: Newborn Screening Testing

10:00 to 10:15 am Break with Light Refreshments
10:15 to 12:00 pm Session 2: Therapy: How does NBS influence Therapy?
12:00 to 1:00 pm Lunch
1:00 to 2:30 pm Session 3: Phenotypes: Establishing Expectations
2:30 to 2:45 pm Break with Light Refreshments
2:45 to 4:30 pm  Session 4: NBS Education: Impact of a New Diagnosis to Providers/Families

*Dinner will be on your own*

Friday, September 27th, 2019

7:30 to 8:30 am Breakfast
8:30 to 10:15 am Session 5: Collaboration - Making the most from NBS
10:15 to 10:30 am Break with Light Refreshments
10:45 to 12:00 pm Session 6: What data is important, and how to obtain / collect it?
12:00 to 1:00 pm Lunch

See Full Agenda


In support of imporving patient care, Univeristy of Minnesotal, Interprofessiona Continuing Education is jointly accredited by the Accrediation Council for Continuing Medical Education (ACCME) and the American Nurses Credentialling Center (ANCC) to provide continuing education for the healthcare team. 

Credit Designation Statements

American Medical Association (AMA)

The University of Minnesota, Interprofessional Continuing Education designates this live activity for a maximum of 10.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

American Nurses Credentialing Center (ANCC)

This activity is awarded up to 10.5 ANCC contact hours.

Other Healthcare Professionals 

Other healthcare professionals who participate in this CE activity may submit their statement of participation to their appropriate accrediting organizations or state boards for consideration of credit. The participant is responsible for determining whether this activity meets the requirements for acceptable continuing education.

CME Logo


Course Objectives

Following the completion of this activity, learners should be able to better:

  1. Identify newborn screening data from different states currently screening for MPS I including disease phenotypes
  2. Discuss strategies for providing education to families with a newly diagnosed infant with MPS
  3. Describe the utility of genotyping, enzyme and glycosaminoglycan testing in establishing a diagnosis
  4. Identify the role of the evaluation, including clinical examination of infants and imaging
  5. Identify the role of potential biomarkers in distinguishing phenotypes
  6. Identify the optimal timing and approach for enzyme therapy and transplantation of infants with Hurler syndrome
  7. Identify the optimal timing to begin enzyme therapy for attenuated patients
  8. Identify opportunities for combining data across institutions to better understand outcomes

Travel and Accommodations


We suggest travelers park in the Washington Avenue Parking Ramp (501 Washington Avenue SE, Minneapolis, MN 55455) which is connected to the Graduate Hotel by a skyway. Parking costs are not included in the registration fees. You can expect to pay $13 for the full day (no prepaid vouchers are necessary).

If the Washington Avenue Parking Ramp is full, the back up ramp is the University Avenue Parking Ramp (1926 University Avenue SE, Minneapolis, MN 55455).

Meeting Hotel / Room Block

There is a room block set up at the Graduate Hotel for the nights of September 25th and September 26th. Rooms must be booked before August 28th to receive the discounted rate. 

We encourage reservations be made online, however, if you would like to book over the phone call 612-379-8888, press for Reservations and ask for the MPS I Newborn Screening Education Room Block. The Reservations Department is open from 8 am to 5 pm, Monday through Friday. 

The Graduate Hotel

615 Washington Ave SE, Minneapolis, MN 55414
Block Rate: $174 / night + tax (reservations must be made before August 28th)


Alternative Local Hotels
Days Hotel University 

2407 University Ave SE, Minneapolis, MN 55414

DoubleTree by Hilton Hotel Minneapolis - University Area

511 Huron Blvd. SE, Minneapolis, MN 55414

Courtyard Minneapolis Downtown

1500 Washington Ave South, Minneapolis, MN 55454