Heartlanders: ACT sheets are available!!! See info below. Lori Williamson, MS, CGC ________________________________ From: Puryear, Michele (HRSA) [mailto:[log in to unmask]] Sent: Monday, May 15, 2006 12:33 PM To: Katharine Harris; Williamson, Lori L. (HSC); Mary Rose Lane; Mary-Frances Garber; Rani Singh, PhD; A. Merrill Henderson; Ammy Cunningham; Anne Comeau ([log in to unmask]); Anne Spencer; Barbara Eckerd; Barbara McNeilly; Betsy Trombino; Brett Harrell; Carol Hassler; Cary Harding; Chanika Phornphutkul; Christine Matsumoto; Cindy Ingham; Claudia Nash; Connie Carroll; Cori Feist; Curtis Coughlin; Cynthia Cameron; David Ledbetter; Debra Doyle; Debra Nelson; Donald R. Swartz; Ellie Mulcahy; Frank Desposito; George Cunningham; Gloria Deyhle; Gloria Rodriguez; Harvey Levy; Isabel Bailey; Jamie Stephenson; Janice Bach; Jess Thoene; John Deboy; John Johnson; John Moeschler; Mulvihill, John J. (HSC); Jon Zonana; Joyce Hooker; Joyce Robl; Kathleen Velazquez; Kathy Morin; Ken Pass; Kerry Silvey; Kristin Schwandt, MS; Leah Burke; Leslie Ciarleglio; Louis Bartoshefsky; Lynn Martinez; Marcia Lavochkin; Marilyn Seabrooks; Mary Haag; Mary Rose Lane; Meagan Krasner; Michael Watson ([log in to unmask]); Michelle Conners; Mike Glass; Murray Katcher; Nancy Vanderburg; Nancy Wade; Pat Moss; Piero Rinaldo; Richard M. Pauli; Rosemarie Smith; Stephanie Birch; Sue Berg; Susan Panny; [log in to unmask]; Sylvia Au; Thalia Wood; Thomas Brewster; Toby Citrin; Wendy Ricker; William Becker; Jill Shuger; Judith Benkendorf ([log in to unmask]); Kenneth Pass ([log in to unmask]) Subject: FW: ACT Sheets and Algorithms for Final Approval - Endocrinopathies __________________________________ Michele A. Lloyd-Puryear, M.D., Ph.D. Chief, Genetic Services Branch Division of Services for Children with Special Health Needs Maternal and Child Health Bureau 5600 Fishers Lane. Rm 18-A-19 Rockville, MD 20857 301-443-8604-fax 301-443-1080-phone ________________________________ From: Watson, Michael [mailto:[log in to unmask]] Sent: Monday, May 15, 2006 11:19 AM To: Watson, Michael; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; Stephen Goodman; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; Puryear, Michele (HRSA); Mann, Marie (HRSA); [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask] Subject: RE: ACT Sheets and Algorithms for Final Approval - Endocrinopathies This note is to inform you that the newborn screening ACT sheets and algorithms are now live on the ACMG web site (acmg.net). You can get to them through http://www.acmg.net/resources/policies/ACT/condition-analyte-links.htm. We greatly appreciate all of your help getting these materials done and into use. As you may know, the materials have been well received. The American Academy of Pediatrics is developing a program for pediatricians about their role in screening and these materials have a significant part in that program. We are also sending out a utility survey about these materials. A good number of states are planning to attach these materials to screen-positive results that go out of their newborn screening labs and we are asking that they send the survey for the first 2 months or so. This will provide us with some feedback as to how well the materials work for primary care professionals. Later this year, we'll share with you any comments and any plans that might arise to edit these. It is also true that no good deed goes unpunished. We are beginning in a new batch of ACT sheets and algorithms for the non-S-allele associated hemoglobinopathies and expect to develop additional new materials as new conditions are added to newborn screening panels. Thank, Mike Michael S. Watson, PhD, FACMG Executive Director American College of Medical Genetics American College of Medical Genetics Foundation 9650 Rockville Pike Bethesda, MD 20814 301-634-7127 301-634-7275 fax