Ehlers-Danlos Syndrome — Research Summary
Printed from RareWays (rareways.com.au) on 5 April 2026
For general awareness only. Not medical advice. Discuss all care options with your healthcare team.
5 Most Recent Research Articles
- 1.
Aortic dissection during the perinatal period in women with Marfan-related disorders: a retrospective cohort study using the Japanese Diagnosis Procedure Combination database.
Nariai Maika et al. — The journal of maternal-fetal & neonatal medicine : the official journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians (1 December 2026)
https://pubmed.ncbi.nlm.nih.gov/41866242/
- 2.
Vascular Ehlers-Danlos syndrome with ruptured thoracic aortic aneurysm complicated by vascular graft and endograft infection and aortobronchial fistula.
Riahi Safa et al. — Journal of vascular surgery cases and innovative techniques (1 June 2026)
https://pubmed.ncbi.nlm.nih.gov/41809019/
- 3.
A laboratory micro-CT technique is useful to visualize and characterize dermal skin components in a 3D manner.
Lundqvist Katarina et al. — Experimental and therapeutic medicine (1 May 2026)
https://pubmed.ncbi.nlm.nih.gov/41858767/
- 4.
Association Between Changes in Shoulder Strength and Self-Reported Shoulder Symptoms in Patients With Hypermobility Following 16-Weeks of High-Load or Low-Load Exercise: A Secondary Analysis of an RCT.
Christensen Thomas et al. — Physiotherapy research international : the journal for researchers and clinicians in physical therapy (1 April 2026)
https://pubmed.ncbi.nlm.nih.gov/41848184/
- 5.
Generation of an induced pluripotent stem cell and isogenic control line from a vascular Ehlers-Danlos Syndrome (vEDS) patient harboring a pathogenic c.755G>T in the COL3A1 gene.
Ming Wu Stanley Chun et al. — Stem cell research (1 April 2026)
https://pubmed.ncbi.nlm.nih.gov/41747624/
Clinical Trials — Currently Recruiting (Australia)
Ask your doctor whether you or your child may be eligible for any of these trials.
- 1.
End-Tidal Oxygen for Intubation in the Emergency Department
Recruiting — Na — Sydney Local Health District
https://clinicaltrials.gov/study/NCT06578468
- 2.
A Study of Pitolisant in Patients With Prader-Willi Syndrome
Recruiting — Phase 3 — Harmony Biosciences Management, Inc.
https://clinicaltrials.gov/study/NCT06366464
- 3.
A Novel Approach to Manage Symptoms of Narcolepsy and Idiopathic Hypersomnia
Recruiting — Na — University of Sydney
https://clinicaltrials.gov/study/NCT07006233
Source: RareWays research directory. Data from PubMed, Europe PMC, OpenAlex, ClinicalTrials.gov.
Always verify information with your healthcare team before making any decisions about your care.
Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of genetic conditions affecting connective tissue. It causes joints to be unusually flexible and skin to be more stretchy or fragile. Symptoms vary widely. There is no cure, but treatments help manage pain and prevent injury.
Most Recent Research
OBJECTIVE: Women with Marfan-related disorders face an elevated risk of aortic dissection during pregnancy and the postpartum period. This study aimed to investigate the incidence of aortic dissection during the perinatal period in women with Marfan-related disorders. METHODS: This retrospective cohort study analyzed data extracted from the Japanese Diagnosis Procedure Combination, a nationwide administrative claims database. We included women diagnosed with Marfan-related disorders (Marfan syndrome, Loeys-Dietz syndrome, or Ehlers-Danlos syndrome) who delivered between 2010 and 2023. We assessed the incidence of aortic dissection during pregnancy or postpartum hospitalization, and the incidence of re-hospitalization for aortic dissection. Moreover, we described the use of cabergoline and the incidence of aortic dissection. RESULTS: During the study period, we identified a total of 226 deliveries by 175 women with Marfan-related disorders. Cesarean section accounted for 69.0% of deliveries. During pregnancy, 1.8% of cases (4/226) experienced aortic dissection and required aortic surgery. In the postpartum period, 2.7% of cases (6/226) experienced aortic dissection during postpartum hospitalization. Within 1 year after delivery, 2.7% of cases (6/226) underwent re-hospitalization for aortic dissection. Cabergoline was administered for elective avoidance of breastfeeding within 2 days postpartum in 15 (6.6%) cases. The incidence of postpartum aortic dissection did not differ significantly between cabergoline users and non-users. CONCLUSIONS: Women with Marfan-related disorders may remain at risk of developing aortic dissection for up to 1 year postpartum.
This information is for general awareness only.
For guidance specific to your situation, please speak with your healthcare team.