Analysis of Micronutrient Tests for Nutritional Deficiencies in Patients with Ehlers-Danlos Syndrome
Identify nutritional deficiencies in people with Ehlers-Danlos Syndromes (EDS) as a starting point for potential therapeutic targeting.
PRINCIPAL INVESTIGATORS: Jessica Pizano DCN, Isabelle Brock MD, and Anne Maitland MD PhD, (NovaCombian Research Institute/Clinical Paradigms LLC, Chesterfield VA); Alissa Zingman MD, (P.R.I.S.M Spine and Joint), Clair A. Francomano MD (Indiana University School of Medicine); Jane R. Schubart PhD (Penn State College of Medicine)
PROJECT GOAL: Identify nutritional deficiencies in people with Ehlers-Danlos Syndromes (EDS) as a starting point for potential therapeutic targeting.
STUDY TYPE: Pilot study, retrospective chart analysis
STATUS: Abstract presented at the American College of Medical Genetics, March 18, 2023
SUMMARY: Hypersensitivity disorders, including mast cell activation disease (MCAD), are emerging as a recognized comorbidity with the hypermobile type of EDS. Nutritional testing is a promising approach to prescribe nutritional therapies to meet the precise needs of patients with EDS. Dietary interventions with higher doses of specific nutrients may be effective in managing symptoms in this population.
The results of this EDSRF study were presented at the annual meeting of the American College of Medical Genetics on March 18, 2023 in Chicago.
Read the Abstract.
Changes in Pain and Other Symptoms of Ehlers-Danlos Syndromes Over Time
Describe the trajectory in EDS symptoms experienced in a cohort of individuals over a decade, and the factors that contributed to their ability to adapt to changing health.
PRINCIPAL INVESTIGATOR: Jane R. Schubart PhD, Susan Mills MPH RN, Heather Stuckey-Peyrot DrPH (Penn State College of Medicine)
PROJECT GOAL: Describe the trajectory in EDS symptoms experienced in a cohort of individuals over a decade, and the factors that contributed to their ability to adapt to changing health.
STUDY TYPE: Qualitative study (semi-structured interviews) of 28 EDS patients
STATUS: Completed.
SUMMARY: This qualitative study is the third study in an ongoing series of research of an EDS patient cohort and builds on a prior study of longitudinal symptom data in the EDS population. Members of this cohort have been tracked for over a decade and the patients are providing rich data for our investigators. This previous study was the first to report a decade of longitudinal data in EDS. The goal of the present study is to expand on this research by increasing our understanding of the trajectory in symptoms of EDS. A manuscript has been accepted for publication.
Title: Patient-Reported Outcomes Following Sectioning of the Filum Terminale for Treatment of Tethered Cord Syndrome Associated with Ehlers-Danlos Syndrome
The purpose of this study was to determine the safety and efficacy of surgical release of the filum terminale (FT) for the treatment of tethered cord syndrome (TCS) in patients with hypermobile Ehlers-Danlos Syndrome (hEDS).
Thirty patients, all female, who were treated with surgical release by a single neurosurgeon completed surveys with items regarding pre- and postoperative symptoms, pain levels, and satisfaction. Surgical release of the FT was safe and effective in this cohort.
INVESTIGATORS: Alissa Zingman MD (P.R.I.S.M. Spine and Joint, Bethesda MD); Kelly Tuchman (Metropolitan Neurosurgery Group, Bethesda MD); Fraser Henderson Sr MD (University of Maryland Capital Region Medical Center, Largo MD & Metropolitan Neurosurgery Group, Bethesda MD); and Clair A. Francomano MD (Indiana University School of Medicine, Indianapolis)
SUMMARY:
The purpose of this study was to determine the safety and efficacy of surgical release of the filum terminale (FT) for the treatment of tethered cord syndrome (TCS) in patients with hypermobile Ehlers-Danlos Syndrome (hEDS).
Thirty patients, all female, who were treated with surgical release by a single neurosurgeon completed surveys with items regarding pre- and postoperative symptoms, pain levels, and satisfaction. Surgical release of the FT was safe and effective in this cohort.
Click here to read the full article on Cureus