Abstract Details

Title Analysis of the Duke Myasthenia Gravis (MG) Clinic Registry: Demographic and Clinical Characteristics

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) S56 - Neuromuscular Therapeutics (4:06 PM-4:18 PM)

Poster/Presentation
Number 004

Background The Registry is a clinician-derived database that contains comprehensive information about patients seen in the Duke MG Clinic since 1980.

Objective To describe demographic and clinical characteristics of patients in the Duke MG Clinic Registry (“The Registry”).

Design/Methods Data from 1980-2010 on Registry patients who met pre-defined criteria for the diagnosis of MG were reviewed.

Results

Definite MG was diagnosed in 1428 patients: 975 (68%) had elevated AChR-antibodies and 377 (26%) did not; antibody data were not available in 77 (6%). Anti-MuSK antibodies were present in 44 (3%). One had both antibodies. Of those with non-MuSK MG, 738 (53%) were male; among 44 with MuSK +MG, only 4 (9%) were male.

Most men with non-MuSK MG had symptom onset after age 50, with peak onset in the 7^th decade; there was no clear predominant age of symptom onset in women. Mean age of onset increased progressively for both men and women from 1980-2010.

Among non-MuSK MG patients, 49% were diagnosed as MG by the first provider seen. The most common alternative diagnoses initially given to explain the patients’ symptoms were vascular disease (13%), cranial nerve palsy or eye movement abnormality (8%), eye disease (6%), muscle disease (3%), Bell Palsy (2%) and psychosomatic illness (2%). Time from symptom onset to initial evaluation at Duke decreased from 1214 days (1980-90) to 795 days (2000-10).

Conclusions The Duke MG Registry is a powerful asset containing clinician-derived data that enables longitudinal analysis of a validated MG population. This initial analysis demonstrates increasing onset age over 3 decades for both men and women, the variable diagnoses initially given to explain patients’ symptoms, and decreasing time to specialty clinic referral. The database is currently undergoing data verification to permit further analyses including frequency of ocular MG and generalization, response to treatments, and factors predicting outcome.

Authors/Disclosures
Donald B. Sanders, MD, FAAN (Duke University Medical Center) PRESENTER	Dr. Sanders has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Accordant Health Services. Dr. Sanders has received personal compensation in the range of $0-$499 for serving as a Consultant for Cabaletta BIO. Dr. Sanders has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kashiv Biosciences. Dr. Sanders has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Momenta Pharmaceuticals. Dr. Sanders has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen RnD. Dr. Sanders has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi-aventis. Dr. Sanders has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for VielaBio. Dr. Sanders has received publishing royalties from a publication relating to health care.
Shruti M. Raja, MD (Duke University)	Dr. Raja has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Signant Health. Dr. Raja has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Regeneron. The institution of Dr. Raja has received research support from American Brain Foundation/Myasthenia Gravis Foundation of America Clinician Scientist Development Award.
Jeff Guptill, MD, FAAN (argenx US)	Dr. Guptill has received personal compensation for serving as an employee of argenx. Dr. Guptill has stock in argenx.
Lisa Hobson-Webb, MD, FAAN (Duke University Medical Center)	An immediate family member of Dr. Hobson-Webb has received personal compensation for serving as an employee of G1 Therapeutics. Dr. Hobson-Webb has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Wiley Publishing. The institution of Dr. Hobson-Webb has received research support from Sanofi Genzyme.
Vern C. Juel, MD, FAAN (Duke University Medical Center)	Dr. Juel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Immunovant. Dr. Juel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Juel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Accordant Health Services. Dr. Juel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen. The institution of Dr. Juel has received research support from argenx. The institution of Dr. Juel has received research support from Alexion. The institution of Dr. Juel has received research support from Janssen. The institution of Dr. Juel has received research support from NIH Rare Diseases Network.
Janice M. Massey, MD, FAAN (Duke University Medical Center)	Dr. Massey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenix. Dr. Massey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Revance Therapeutics. Dr. Massey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Momenta. The institution of Dr. Massey has received research support from Revance .

��ɫ��

��ɫ��