- Email: [email protected]
When a Diagnosis is Elusive: New Research Program Addresses Rare Diseases
When a Diagnosis is Elusive New Research Program Addresses Rare Diseases Alexa Newell
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The National Institutes of Health (NIH) has launched a new clinical research program that will aim to provide answers to patients with mysterious conditions that have long eluded diagnosis. Called the Undiagnosed Diseases Program, the initiative will focus on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, MD, by physicians across the nation. NIH will enlist the expertise of more than 25 of its senior attending physicians, whose specialties include endocrinology, immunology, oncology, dermatology, dentistry, cardiology and genetics. To be considered for this NIH pilot program, a patient must be referred by a physician and provide all medical records and diagnostic test results requested by NIH. For more information visit http://rarediseases. info.nih.gov/Undiagnosed. Physicians and patients with specific inquiries may call the NIH Clinical Center information research line at (866) 444-8806.
436
© 2008, AWHONN
Diabetes Medication Guide The Agency for Healthcare Research and Quality (AHRQ) has released Pastillas para la diabetes tipo 2, a new consumer guide for Hispanic adults who have type 2 diabetes and need information to help them compare various oral medications for their illness. The guide organizes comparative research results according to diabetes patients’ concerns and questions, and assists them in using research results when talking with health care professionals about their diabetes medicines. The guide also warns patients to be alert for problems such as hypoglycemia and other potential side effects. In addition, the guide provides comparison of the dose and average cost of each generic and brand-name diabetes medication and the appropriate dose when taken in combination. The English-language version, Pills for Type 2 Diabetes, and other AHRQ publications for consumers and clinicians can be found at http:// effectivehealthcare.ahrq.gov/. The consumer
http://nwh.awhonn.org
guides can be ordered free of charge by sending an e-mail to ahrqpubs@ahrq. hhs.gov or by calling (800) 358-9295.
requirements have 1-year phase-in period that includes defined milestones, with full implementation expected by January 1, 2010. For more information visit http://www.jointcommission.org/.
Position Statement on Mood Disorders
Genetics Study The Center for Human Genetics at Duke University Medical Center is recruiting families in which a current pregnancy has been diagnosed with anencephaly or spina bifida. The goal of the study is to discover the genetic and environmental causes of neural tube defects. Study participation includes donating a cord blood or tissue sample from the pregnancy, blood samples from the parents, a telephone interview and review of medical records. For more information, or to enroll in the study, contact the Duke Neural Tube Defects Study toll-free at (866) 3853683, send an email to [email protected]. duke.edu, or visit the study Web site at http://www.chg.duke.edu/diseases/ ntd.html.
AWHONN’s Board of Directors has approved a revised position statement, The Role of the Nurse in Postpartum Mood and Anxiety Disorders. The scope of the statement has been expanded to include current information and evidence about the range of mood and anxiety disorders—beyond postpartum depression alone—that are associated with the childbearing period. The revised position statement highlights the need for nurses to be knowledgeable about and screen women for these disorders and can be viewed at http://www.awhonn. org/awhonn/content.do?name=05_ HealthPolicyLegislation/5H_PositionStatements.htm. For additional AWHONN statements covering a wide range of topics in childbearing, neonatal and women’s health nursing, visit http:// www.awhonn.org. All statements may be downloaded at no cost.
Joint Commission Safety Goals The Joint Commission has released the 2009 National Patient Safety Goals and related requirements for accredited hospitals and critical access hospitals, to promote specific improvements in patient safety by providing health care organizations with solutions to persistent patient safety problems. Major changes include three new requirements related to preventing deadly health care-associated infections due to multiple drug-resistant organisms (MDROs), central line-associated bloodstream infections and surgical site infections. These new infection-related Alexa Newell is editorial coordinator at AWHONN in Washington, DC.
Save These Dates! DATE
LOCATION
EVENT
September 23, 2008
Rockville, MD
November 11, 2008
Columbus, OH
Preventing Alcohol, Tobacco, and Other Substance-exposed Pregnancies: A Community Affair. For more information visit, https://www.regonline.com/builder/site/Default.aspx?eventid=634538 or call (301) 593-2800 or email [email protected] Seventh Annual Perinatal Conference. Following our Hearts: Cardiac Health from Conception and Beyond. For more information, contact Linda Newhous at (614) 566-5393 or [email protected]
November 19, 2008
Milwaukee, WI
24th Annual Perinatal Progress Conference. Contact Janice McIntosh, BSN, RNC, at (414) 447-2485 or Janice. [email protected]
March 27 to 29, Williamsburg, VA 2008
17th Annual Congress on Women’s Health. For more information visit www.bioconferences.com/wh, or call (914) 740-2100 or (800) 5-BIOCON, or e-mail [email protected]
Ongoing
The AWHONN Fetal Heart Monitoring Principles and Practices Workshop. Online at http://www.awhonn.org
Call for location
Get your next meeting or educational session listed in Nursing for Women’s Health by emailing your information to [email protected] or by faxing to: NWH—Save These Dates, Attn: Alexa Newell: (202) 728-0575. Announcements are included on a space-available basis. Please send announcements at least six months before you wish to have them published.
DOI: 10.1111/j.1751-486X.2008.00369.x
October | November 2008
Nursing for Women’s Health 437
t
The National Institutes of Health (NIH) has launched a new clinical research program that will aim to provide answers to patients with mysterious conditions that have long eluded diagnosis. Called the Undiagnosed Diseases Program, the initiative will focus on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, MD, by physicians across the nation. NIH will enlist the expertise of more than 25 of its senior attending physicians, whose specialties include endocrinology, immunology, oncology, dermatology, dentistry, cardiology and genetics. To be considered for this NIH pilot program, a patient must be referred by a physician and provide all medical records and diagnostic test results requested by NIH. For more information visit http://rarediseases. info.nih.gov/Undiagnosed. Physicians and patients with specific inquiries may call the NIH Clinical Center information research line at (866) 444-8806.
436
© 2008, AWHONN
Diabetes Medication Guide The Agency for Healthcare Research and Quality (AHRQ) has released Pastillas para la diabetes tipo 2, a new consumer guide for Hispanic adults who have type 2 diabetes and need information to help them compare various oral medications for their illness. The guide organizes comparative research results according to diabetes patients’ concerns and questions, and assists them in using research results when talking with health care professionals about their diabetes medicines. The guide also warns patients to be alert for problems such as hypoglycemia and other potential side effects. In addition, the guide provides comparison of the dose and average cost of each generic and brand-name diabetes medication and the appropriate dose when taken in combination. The English-language version, Pills for Type 2 Diabetes, and other AHRQ publications for consumers and clinicians can be found at http:// effectivehealthcare.ahrq.gov/. The consumer
http://nwh.awhonn.org
guides can be ordered free of charge by sending an e-mail to ahrqpubs@ahrq. hhs.gov or by calling (800) 358-9295.
requirements have 1-year phase-in period that includes defined milestones, with full implementation expected by January 1, 2010. For more information visit http://www.jointcommission.org/.
Position Statement on Mood Disorders
Genetics Study The Center for Human Genetics at Duke University Medical Center is recruiting families in which a current pregnancy has been diagnosed with anencephaly or spina bifida. The goal of the study is to discover the genetic and environmental causes of neural tube defects. Study participation includes donating a cord blood or tissue sample from the pregnancy, blood samples from the parents, a telephone interview and review of medical records. For more information, or to enroll in the study, contact the Duke Neural Tube Defects Study toll-free at (866) 3853683, send an email to [email protected]. duke.edu, or visit the study Web site at http://www.chg.duke.edu/diseases/ ntd.html.
AWHONN’s Board of Directors has approved a revised position statement, The Role of the Nurse in Postpartum Mood and Anxiety Disorders. The scope of the statement has been expanded to include current information and evidence about the range of mood and anxiety disorders—beyond postpartum depression alone—that are associated with the childbearing period. The revised position statement highlights the need for nurses to be knowledgeable about and screen women for these disorders and can be viewed at http://www.awhonn. org/awhonn/content.do?name=05_ HealthPolicyLegislation/5H_PositionStatements.htm. For additional AWHONN statements covering a wide range of topics in childbearing, neonatal and women’s health nursing, visit http:// www.awhonn.org. All statements may be downloaded at no cost.
Joint Commission Safety Goals The Joint Commission has released the 2009 National Patient Safety Goals and related requirements for accredited hospitals and critical access hospitals, to promote specific improvements in patient safety by providing health care organizations with solutions to persistent patient safety problems. Major changes include three new requirements related to preventing deadly health care-associated infections due to multiple drug-resistant organisms (MDROs), central line-associated bloodstream infections and surgical site infections. These new infection-related Alexa Newell is editorial coordinator at AWHONN in Washington, DC.
Save These Dates! DATE
LOCATION
EVENT
September 23, 2008
Rockville, MD
November 11, 2008
Columbus, OH
Preventing Alcohol, Tobacco, and Other Substance-exposed Pregnancies: A Community Affair. For more information visit, https://www.regonline.com/builder/site/Default.aspx?eventid=634538 or call (301) 593-2800 or email [email protected] Seventh Annual Perinatal Conference. Following our Hearts: Cardiac Health from Conception and Beyond. For more information, contact Linda Newhous at (614) 566-5393 or [email protected]
November 19, 2008
Milwaukee, WI
24th Annual Perinatal Progress Conference. Contact Janice McIntosh, BSN, RNC, at (414) 447-2485 or Janice. [email protected]
March 27 to 29, Williamsburg, VA 2008
17th Annual Congress on Women’s Health. For more information visit www.bioconferences.com/wh, or call (914) 740-2100 or (800) 5-BIOCON, or e-mail [email protected]
Ongoing
The AWHONN Fetal Heart Monitoring Principles and Practices Workshop. Online at http://www.awhonn.org
Call for location
Get your next meeting or educational session listed in Nursing for Women’s Health by emailing your information to [email protected] or by faxing to: NWH—Save These Dates, Attn: Alexa Newell: (202) 728-0575. Announcements are included on a space-available basis. Please send announcements at least six months before you wish to have them published.
DOI: 10.1111/j.1751-486X.2008.00369.x
October | November 2008
Nursing for Women’s Health 437