October 25, 2013
U-M Scleroderma director takes lead role in new guidelines for screening for PAH in Systemic Sclerosis
October 3, 2013
CONSENSUS GUIDELINES PUBLISHED ON SCREENING FOR PAH IN SYSTEMIC SCLEROSIS; RECOMMENDATIONS AIM FOR EARLIER DIAGNOSIS OF THIS LEADING CAUSE OF MORTALITY
All patients with systemic sclerosis (SSc) and connective tissue diseases should be screened for pulmonary arterial hypertension (PAH), an international panel of experts recommended in an article published in the September issue of the journal Arthritis & Rheumatism. The recommendations, part of a larger effort to improve patient outcomes by diagnosing earlier, identify specific tests to be performed in screening these patients for PAH.
PAH is a rare, chronic and progressive lung disease, often difficult to diagnose. PAH affects up to 15 percent of those with CTD and is the leading cause of mortality among them. SSc, or scleroderma, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. Both are complicated conditions.
The article was the result of a literature review and consensus process by CTD and PAH experts from the United States, Canada and the European Union. The panel was convened by the Pulmonary Hypertension Association (PHA) and the Scleroderma Foundation, Inc.
The article, “Recommendations for Screening and Detection of Connective-Tissue Disease Associated Pulmonary Arterial Hypertension,” recommended the following initial screening evaluation of CTD patients:
• Pulmonary function test (PFT) including diffusion capacity carbon monoxide (DLCO)
• Transthoracic echocardiogram (TTE)
• N-terminal pro b-type natriuretic peptide (NT-Pro BNP)
The recommendations also called for annual TTE and PFT in SSc and spectrum disorders and for the full screening panel to be performed as soon as any new signs or symptoms are present.
An abstract of the journal article can be read here: http://www.ncbi.nlm.nih.gov/pubmed/24022584
These recommendations are the first to provide such specific guidelines that are evidence-driven and consensus-based, said the article’s co-principal investigator, Dinesh Khanna, M.D., of the University of Michigan in Ann Arbor. “Earlier recommendations that were developed as part of larger efforts in PAH did not provide detailed recommendations for patients with CTD-PAH. Hence, our efforts to develop these recommendations for screening and early detection of CTD-associated PAH,” said Khanna.
PHA’s President and CEO, Rino Aldrighetti, said, “Our goal was to bring renowned clinicians and researchers together to collaborate on these guidelines, taking into consideration different screening and diagnosis practices internationally.”
Robert Riggs, CEO of the Scleroderma Foundation, said “Scleroderma is among the most complex of connective tissue diseases. The Scleroderma Foundation, PHA and the medical experts involved in this project agree that these guidelines will arm the medical community with a unified approach to caring for patients living with these complicated conditions.”
PHA has made earlier diagnosis a high priority now that multiple treatments are available for PH and additional treatments are undergoing review by the Food and Drug Administration. The Scleroderma Foundation is one of 33 organizations around the world who endorse PHA’s Sometimes its PH early diagnosis campaign (www.SometimesItsPH.org)
Funding for the consensus process was provided to the Scleroderma Foundation and PHA by Actelion Pharmaceuticals, US, Inc.; Gilead Sciences, and United Therapeutics Corporation, through unrestricted medical education grants. Dr. Khanna was also supported by a grant from NIH/NIAMS.
About The Pulmonary Hypertension Association (PHA)
Headquartered in Silver Spring, Md., PHA is the country’s leading organization connecting pulmonary hypertension patients, families, and medical professionals. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA provides free access to information on its Web site about pulmonary hypertension and facilitates over 200 support groups around the nation, helping many of the estimated 30,000 diagnosed patients in the U.S. To learn more, visit: www.PHAssociation.org
About The Scleroderma Foundation
The Massachusetts-based Scleroderma Foundation is the world’s largest nonprofit organization focused on the autoimmune disease scleroderma (a.k.a. systemic sclerosis). It has a three-fold mission to provide patient education services, generate greater awareness of the disease, and to fund medical research to find the cause, better treatments, and a cure. The Foundation’s national network of 24 chapters and more than 160 active support groups connect patients, families and the medical community, and serves to advance the Foundation’s mission to the 300,000 people living in the United States with the disease. For more information about scleroderma and the Scleroderma Foundation, visit: www.scleroderma.org
Christina Relacion, Communications Manager, Scleroderma Foundation
(800) 722-4673, Ext. 243
Mollie Katz, VP for Community Engagement, Pulmonary Hypertension Association
(301) 565-3004 x774 or (240) 330-5638
NEW SCLERODERMA CLASSIFICATION CRITERIA PUBLISHED BY ACE/ EULAR. Dr. Khanna participated and played a pivotal role in developing this criteria. The criteria can be accessed using the following link
Dr Khanna was invited to Hamilton, New Zealand to present at their annual rheumatology meeting. Dr. Khanna discussed the latest evidence in the management of pulmonary arterial hypertension and other topics on diagnosis and management of scleroderma.
Dr. Khanna presented the first recommendations for screening and diagnosis of connective tissue disease-associated pulmonary arterial hypertension at the annual EULAR meeting in Madrid, Spain. Please click here to view the Congress newsletter for more details.
APRIL 28, 2012: International Symposium on Pathogenesis and Management of Systemic Sclerosis: An Update
Prof Matucci-Cerinic, Dr. Lafyatis, Dr. Medsger, Dr. Denton, Dr.
Schiopu, Dr. Khanna, Dr. Neubig , Dr. Gestwicki, Dr. Fox. Missing from photo: Dr. Clements, Dr. McLaughlin
Internationally renowned scleroderma experts presented a daylong symposium on the pathogenesis, diagnosis and treatment of scleroderma and related issues on Saturday, April 28 at the University of Michigan. The program was sponsored by the University of Michigan Division of Rheumatology and the University of Michigan Scleroderma Program.
Physicians, nurses and other health-care professionals attended. The University of Michigan Medical School designated this live activity for a maximum of 5.5 AMA PRA Category 1 Credits™.
The symposium was held in the Danto Auditorium in the University of Michigan Cardiovascular Center, 1500 E. Medical Center Drive, Ann Arbor.
Dinesh Khanna, MD, MSc, Marvin & Betty Danto Research Professor, Associate Professor of Medicine, Director, Scleroderma Program, University of Michigan
Christopher Denton, PhD, FRCP, Professor of Experimental Rheumatology,University College London, UK
Marco Matucci-Cerinic, MD, PhD, Professor of Rheumatology and Medicine, University of Florence, Italy
Philip Clements, MD, Professor Emeritus of Medicine, Division of Rheumatology, UCLA
Robert Lafyatis, MD, Professor of Medicine and Laboratory Director, Boston University Medical Center
Vallerie McLaughlin, MD, Professor of Medicine, Director, Pulmonary Hypertension Program, University of Michigan
Thomas Medsger, Jr, MD, Gerald P. Rodnan Professor of Medicine, Director, Scleroderma Research Program, University of Pittsburgh School of Medicine
Elena Schiopu, MD, Assistant Professor of Medicine, Scleroderma Program, University of Michigan
Jason E. Gestwicki, PhD, Associate Professor, William B. Pratt Collegiate Professor, Departments of Pathology and Biological Chemistry, Director, Center for Chemical Genomics, The Life Sciences Institute, University of Michigan
In addition to case discussions, the program covered the following topics:
- Early diagnosis of systemic sclerosis
- Systemic sclerosis and interstitial lung disease
- GI involvement
- Pathogenesis of systemic sclerosis
- Vasculopathy in systemic sclerosis and management of Raynaud’s phenomenon and digital ulcers
- How do I manage patients with scleroderma?
- Biomarkers in scleroderma: Are they ready for trials and clinical practice?
- Scleroderma and pulmonary hypertension: Why rheumatologists need to be aware of this serious complication
- Role of autoantibodies in scleroderma: its relevance in clinical practice
- Basics of academic drug discovery
Leah Kramer, BS, CCRP, Julie Konkle, BSN, RN, CCRP, Terry Thielan, LPN, CCRP, Linda Briggs, PhD, MPT, CCRP, Monika Benedict-Blue, BSW, CCRP, Yvonne Sturt, BHS, CCRP (missing from photo)
University of Michigan Scleroderma Program Staff Attain Certified Clinical Research Professional Certification (CCRP)
Six University of Michigan Scleroderma Program staff members in the Division of Rheumatology have attained certification as Certified Clinical Research Professionals (CCRP) from the Society of Clinical Research Associates (SoCRA). SoCRA developed this International Certification Program in order to create an internationally-accepted standard of knowledge, education and experience for clinical research professionals. The certification program is to promote recognition and continuing excellence in the ethical conduct of clinical trials.
To become certified, individuals must pass a rigorous examination covering five major subject areas including Conduct of Clinical Trials, Institutional Review Boards and Regulations, Ethical Issues, and Abstracting Information from Medical Records. The exam covers knowledge of the United States Code of Federal Regulations, study design, financial disclosure, protocol development, record retention, adverse events, FDA forms completion, reporting requirements, investigational new drug applications, and ethical codes and doctrines. Individuals must demonstrate the ability to utilize critical thinking skills in practical applications with regard to clinical trials.
Kudos to the Scleroderma Program Research Team!
“You Gotta Eat!” is a new health and wellness book written by scleroderma patient and Registered Dietitian, Linda Clancy Kaminski. The light-hearted, yet thought-provoking, diet and exercise advice dispensed throughout the book teaches realistic strategies for making wiser food choices, controlling weight, and offers guidelines for managing and/or preventing chronic diseases such as scleroderma, diabetes, high cholesterol, prostate cancer, and hypertension. The book also includes a chapter entitled, “Healthy Living with Scleroderma”.
An excerpt from the book:
Systemic scleroderma invaded my body over nine years ago, and I have struggled to meet every physical and emotional challenge this savage beast has thrown my way…In my opinion, there is no worse feeling than losing control over your own body. The unpredictable nature of scleroderma renders you essentially helpless in the face of physical pain, debilitating fatigue, and unceasing emotional turmoil, and has the capacity to steal your quality of life….I decided to take matters into my own hands by embracing the things I could control, such as the adoption of healthy lifestyle habits that would enhance my ability to manage the symptoms and resulting stress. I eventually made peace with my body by treating it well. I now offer you the chance to do the same.
Some topics of interest in the book for scleroderma patients:
A healthy daily diet for a person living with scleroderma
Lifestyle changes for specific scleroderma-related issues:
- Decreased GI motility and constipation
- Difficulty swallowing
- Excessive weight loss
- Poor circulation/Raynaud’s Phenomenon
- Tight, thickened skin
- Joint stiffness
- Compelling reasons to exercise
- How to create an exercise program
To learn more about the book’s content and to order your copy of “You Gotta Eat!”, visit www.thenuttynutritionist.com
October 19, 2011 – Michigan Rheumatism Society Annual Meeting. Dr. Elena Schiopu, Guest Speaker
Dr. Elena Schiopu, Clinical Assistant Professor in the Scleroderma Program, Division of Rheumatology at the University of Michigan, has been chosen as the guest speaker at the annual Michigan Rheumatism Society Meeting on October 19 at Weber’s Inn in Ann Arbor. Dr. Schiopu’s talk will focus on the current status of clinical care for systemic sclerosis and current research studies in the Scleroderma Program.
September 3, 2011 – The 5th Annual Greatest 5K Ever, sponsored by the Help Fight Scleroderma Foundation, took place in beautiful Riverside Park in Grand Rapids, Michigan. For the fourth year in a row, proceeds from the event benefited scleroderma research at the University of Michigan.
In addition to the Help Fight Scleroderma Foundation’s 5K Run, there was a Kids Run and a Stroller Division. The Michigan Chapter of the Scleroderma Foundation also hosted a fundraiser walk Stepping Out Across Michigan to Cure Scleroderma. Fun festivities of the day included post-race pizza, music, and a raffle for tickets to Michigan, Michigan State, and Notre Dame football games.
Joe Brennan (left) and Drs. Dinesh Khanna and Elena Schiopu with their families
The Help Fight Scleroderma Foundation was created by Joseph Brennan and his family as a means to raise awareness about scleroderma in west Michigan. Please visit Help Fight Scleroderma Foundation for more information.
Dinesh Khanna, MD, MS (left) with Scleroderma Foundation CEO Robert Riggs.
Dr. Khanna was awarded “Doctor of the Year” during the awards banquet.
July 16, 2011 – San Francisco, California: Dr. Dinesh Khanna is awarded “Doctor of the Year” from the National Scleroderma Foundation. Read the entire press release.
The Scleroderma Foundation named Dinesh Khanna, M.D., M.Sc., its 2011 Doctor of the Year during this year's National Patient Education Conference held last month in San Francisco. The award recognizes a skilled physician or researcher for his or her involvement within the Foundation, and for helping provide guidance and support to the organization's patient population.
New York’s Times Square news bulletin announces award to Dr. Khanna
"Those who know Dr. Khanna as a physician and caretaker know that he is a caring and compassionate doctor who does not lose sight of the fact those patients always come first," said Scleroderma Foundation's CEO Robert J. Riggs. "He is a highly-regarded researcher who is well respected among his peers in the medical community, and his patients also know him as a compassionate physician who always puts their well-being first and foremost."
Dr. Khanna is the Marvin & Betty Danto Research Professor of Connective Tissue Research and Associate Professor of Internal Medicine in the Division of Rheumatology, and the newly-appointed director of the Scleroderma Program at the University of Michigan in Ann Arbor. He previously was the clinical director of the scleroderma clinic at the David Geffen School of Medicine at the University of California at Los Angeles.
|Dinesh Khanna, MD, MS
Dinesh Khanna, MD, MS, Marvin & Betty Danto Research Professor of Connective Tissue Research and Associate Professor of Internal Medicine in the Division of Rheumatology, has been appointed as the new director of the University of Michigan Scleroderma Program effective July 1, 2011.
Originally from New Delhi, India, Dr. Khanna received his medical degree from the University College of Medical Sciences. He completed postdoctoral training as an intern and resident in internal medicine at Wright State University School of Medicine in Dayton, Ohio, and a clinical and research fellowship in rheumatology and a master’s in clinical research at the University of California at Los Angeles School of Medicine. Dr. Khanna most recently was Assistant Professor of Medicine at the David Geffen School of Medicine at UCLA. He was also Clinical Director of UCLA’s Scleroderma Clinic.
Dr. Khanna is the author of over 110 peer-reviewed publications and book chapters. He has won numerous awards, including the 2007 Spirit of Leadership Award and the 2011 “Best Doctor of the Year” award from the Scleroderma Foundation. He is board certified in rheumatology. Dr. Khanna is currently funded by the National Institutes of Health and is particularly interested in the design of clinical trials and assessing patient reported outcomes in patients with scleroderma.
Dr. Khanna is a fellow of the American College of Rheumatology and the American College of Physicians.
|Mr. and Mrs. Joseph Clancy
January 2011 – The Scleroderma Program received a fourth gift of $20,000 from The Clancy Family Foundation of Farmington Hills, Michigan for scleroderma research at the University of Michigan.
This gift allows the continuation of several novel scleroderma research studies that would not be possible without these types of gifts. The Clancy Family Foundation’s continued partnership and support of scleroderma research is very much appreciated.
November 21, 2010 – The 9th Annual Pulmonary Hypertension Awareness Luncheon and Conference was held at the Sheraton Detroit Novi Hotel, Novi, Michigan
The Pulmonary Hypertension Awareness luncheon and conference provided a great opportunity for scleroderma patients to meet and share their experiences and hear talks from physicians within the Michigan Pulmonary Hypertension community. Featured speakers were Dr. Elena Schiopu from the University of Michigan Scleroderma Program, Dr. Vallerie McLaughlin from the University of Michigan Pulmonary Hypertension Program, and Dr. Hector Cajigas from Henry Ford Hospital’s Pulmonary Hypertension Program. To find a PH Support Group near you, visit Pulmonary Hypertension Association.
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