The purpose of this study is to investigate how Ehlers-Danlos Syndrome severity impacts Autism Spectrum Disorder. Participants will be asked whether or not they have EDS, as well as what subtype of EDS they have. They will also be asked to complete the SF-36 short-form health survey to help determine the severity of the EDS, and the Autism Spectrum Quotient.

You must be 18 years of age or older to participate.

Click here to take part.

The purpose of this survey is to investigate the patient perceptions of healthcare specialists’ knowledge of hEDS before they were clinically diagnosed with hEDS.

The study’s findings may lead to a better understanding of which specialists are perceived by patients as having the most and the least knowledge of hEDS. This information could help to identify which specialists commonly seen by individuals with hEDS could benefit from additional education about hEDS, which may help decrease the length of the diagnostic odyssey.

In this survey, knowledge should be ranked based on how much information you feel that the specialist knew about hEDS before you had a diagnosis of hEDS.

Click here to take part.

The purpose of this survey is to investigate patient perceptions of healthcare specialists’ knowledge of hEDS after receiving a clinical diagnosis of hEDS.

The study’s findings may lead to a better understanding of which specialists are perceived by patients as having the most, and the least, knowledge of hEDS. This information could help to identify which specialists commonly seen by individuals with hEDS could benefit from additional education about hEDS. This may help decrease the length of the diagnostic odyssey and increase the quality of informed care that patients receive after their diagnosis.

In this survey, knowledge should be ranked based on how much information you feel that the specialist knew about hEDS after you had a diagnosis of hEDS.

Click here to take part.

This research aims to listen to your experience of psychosocial interventions in helping manage hEDS/JHMS. Psychosocial interventions can include Cognitive Behavioural Therapy (CBT), pain management courses, health professional-led self-management support, mindfulness, counselling, Acceptance and Commitment Therapy (ACT), or group therapy.

As a person with hEDS/JHMS, we are interested in learning about your experience with the support offered to help manage the condition.
You can take part if you meet the following criteria;

• You are over the age of 18
• Have a diagnosis of Ehlers-Danlos Syndrome hypermobility type or Joint Hypermobility Syndrome
• And have experience with any of the psychosocial interventions mentioned above.

If you are unsure if you have completed something that is considered a psychosocial intervention, please email the primary researcher ([email protected]).

Click here to take part.

The purpose of this research is to increase understanding of the relationship between pelvic health knowledge (health literacy) and confidence (self-efficacy) in managing female pelvic dysfunction symptoms in hypermobile Ehlers Danlos syndrome.

As a participant in the study, you will complete a survey that will require about 10 to 15 minutes of your time. Please note that your participation is voluntary, and your information is collected anonymously. Your responses will not be linked to your participation. To participate you must be/have:
• An adult aged 18 years or older
• Female sex at birth (presence of vulva/vagina at birth)
• Diagnosis of hypermobile Ehlers Danlos syndrome (hEDS)
• Symptoms of pelvic health dysfunction (problems with bowel, bladder, or sexual health)

Click here to take part.

This study will use a cross-sectional quantitative research design, specifically utilising a survey method to collect data to answer the research question. The survey will be conducted remotely via Qualtrics. The questionnaire consists of 15 ~25 questions depending on their answers; it comprises a mixture of open-end and close-end, and it will take about 20 minutes to complete. The questionnaire will include (1) general information about participants: age, gender, and the rare disease they have, (2) Participants’ perceptions of clinical trials (e.g. their overall impression) (3) participants attitudes towards current recruitment strategies (e.g. how they were approached).

Participants will be asked to complete the questionnaire within 2 weeks of receiving it. Inclusion criteria: Diagnosed with a form of EDS or HSD (self-reported) Above the age of 18 (adults) Sufficient English language skills to complete the survey Cognitive ability to complete the survey.

Click here to take part.

Ophthalmic Implications of Marfan and Ehlers-Danlos Syndromes

Very little is known about the impact of EDS on the eyes. A few studies have demonstrated frequent ophthalmic complaints and increased complication rates with ophthalmic surgery, but these studies are limited by a low number of patients. Through this study, researchers at the University of Pennsylvania hope to get a better understanding of the ophthalmic complaints individuals with EDS have. The researchers especially hope to get a better understanding of the retinal problems patients may have; they ask specific questions about retinal problems and provide the option for patients to upload their own, de-identified retinal imaging. Ultimately, they will use this data to highlight issues physicians should focus on when treating individuals with EDS, and perhaps also identify new hypotheses for mechanisms explaining the link between EDS and various ophthalmic symptoms.

Take this survey here, it will take around five minutes of your time.

Illness Perceptions and Illness Perception Incongruence as Predictors of Psychological Distress Among Caregivers in the Context of Chronic Multi-Symptom Illness

Researchers at the University of Albany are looking to gain a better understanding of the experiences of caregivers caring for individuals with conditions characterized by chronic pain, chronic fatigue, chronic irritable bowel, and/or other chronic symptoms. This study is seeking to understand how caregivers think about their care recipient’s chronic multi-symptom illness (CMI), and if caregivers believe they think differently about CMI than their care recipients. This study hopes to understand if caregiver perceptions predict caregiver distress.

This survey will take approximately 20 minutes to complete, click here to take part.

Personal Experiences of the Use of Dynamic Lycra Orthoses to Manage Chronic Pain

The purpose of this study is to collect and analyse the experiences of people with hypermobility (including hEDS and EDS) who have used dynamic lycra orthosis (DLO) to manage their symptoms. This study will mainly be looking at the impact on chronic pain, but the management of other symptoms will also be reviewed.

Click here to take part.

Parents and children often seek explanations to better understand chronic pain and how to best manage the condition. Explanations received by parents and children regarding chronic pain can either help reduce or increase the pain experience. Health professionals frequently provide pain education to parents and their children to reduce pain and disability as well as establish health attitudes and beliefs about pain.

Currently, it is not well understood what words and/or language are seen as helpful or unhelpful when addressing with chronic lower limb pain. Therefore, the purpose of this survey is to explore what language health professionals, parents of children with chronic lower limb pain and adolescents impacted by chronic lower limb pain find helpful or unhelpful when addressing chronic pain. Participants will be asked to complete a survey identifying and justifying helpful and unhelpful phrases that are/can be used by health professionals when discussing chronic lower limb pain.

Click here to take part.

This study investigates brain fog or cognitive difficulties in Ehlers-Danlos Syndrome specifically testing auditory and verbal working memory and attention. This is a follow-up study on a previous IQ battery study. We test EDS patients and controls on 3 tasks testing these abilities as well as surveys measuring commonly used health outcomes and revelant demographic information. This is done to see if particular aspects of pain, fatigue, sleep, dysautonomia or other factors best predict brain fog symptoms.

The survey and tasks are completed independently at home remotely by participants and both sections take 1 hour each to complete. Accomodations are made for breaks as needed by the participants. We require use of PC or Laptop where either speakers or headset are used in a quiet environment as some tasks use audio cues. This study requires the EDS participant to have had doctor-confirmed EDS diagnosis in the past, though no medical records are requested.

Click here to take part.

Eligibility for completing the questionnaire:

• You must be aged 18 or over.
• You must have a diagnosis of HSD/EDS
• You must be currently completing treatment or previously been treated by a physiotherapist for this condition
• You may be a member of the charities listed below (this is not essential for eligibility)

Click here to take part

We are conducting a study focused on experiences of discussing or not discussing an observable disability with others. We are interested in recruiting from The Ehlers-Danlos Society for participation in our study, and we would appreciate if you would share the information pasted below or attached with your community via email or private social media groups. Please do not share this information on any public social media accounts to avoid attracting bots.

This study involves a 30–60-minute interview via phone, video call, or another way that is accessible to you.

Click here to take part