Joint hypermobility and related disorders :
studies in emotion, cognition and behavior.

Home | Team | Studies | News | Publications | Support us | Partners

RISEDh Study – Understanding Suicide Risk in Individuals with Hypermobile Ehlers-Danlos Syndrome: A Comparative Mixed-Methods Study 

Context: Suicide is a major public health concern. Approximately 1 million people die by suicide each year worldwide, making it one of the leading causes of death. To prevent this phenomenon, identifying vulnerable populations and risk factors for suicidal behavior (SB) is a top priority. In this regard, chronic physical pain, physical disability, psychological distress, and female gender are well-established risk factors for SB. These characteristics are overrepresented in individuals with Hypermobile Ehlers-Danlos Syndrome (hEDS). Consequently, exploring suicidality among people affected by this syndrome appears necessary. 

Objectives: 

• To explore the frequency of suicidal behavior (SB), suicidal ideation (SI) (lifetime prevalence), and current suicide risk (CSR) in patients with hEDS, and compare them to individuals with other chronic pain conditions (Classical EDS, Hypermobility Spectrum Disorders, and chronic low back pain) as well as to healthy controls. 

• To examine the sociodemographic, clinical, and psychosocial determinants of SB, SI, and CSR in individuals with hEDS. 

• To explore the lived experience and personal meaning of SB and SI in hEDS patients with a history of suicide attempt or ideation. 

Method: 
RISEDh is a cross-sectional, comparative, mixed-methods observational study. It is a complementary study to ACTI-SEDh. In the first phase, participants undergo the MINI (Mini International Neuropsychiatric Interview DSM-5) to assess mental disorders, including suicide risk. Clinical, sociodemographic, and psychosocial data are also collected (partially drawn from the ACTI-SEDh study). 

In a second phase, hEDS participants with a history of SB, SI, or CSR (as determined by the MINI) will be re-contacted and invited to take part in a semi-structured interview for the qualitative part of the study. 

Researchers: Carolina Baeza-Velasco (PI), Jelena Forget (PhD student), Philippe Courtet, Roland Jaussaud, François Jedryka, Cécile Flahault. 

Affiliated Institutions: LPPS Laboratory, Université Paris Cité; Non-Vascular Ehlers-Danlos Syndrome Competence Center, University Hospital of Nancy; Pain Assessment and Treatment Center, University Hospital of Nîmes. 

Funding: The Ehlers-Danlos Society