Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| University College, London | OTHER |
Not provided
Not provided
Not provided
Not provided
This study involves a comprehensive nutritional assessment of hEDS participants who have functional gastrointestinal disorders and dietary intervention to broaden their food choices and nutritional intake.
The impact of diet on symptoms in patients with Hypermobile Ehlers Danlos Syndrome (hEDS/HSD) is widely recognised yet poorly understood. The investigators aim is to assess existing dietary patterns and nutritional status in hEDS/HSD as well as pilot a personalised dietary strategy to optimise nutrition. Participants recruited from EDS UK and a tertiary Neurogastroenterology clinic at the Royal London Hospital will undergo comprehensive nutritional assessment and blood tests. The investigators will then undertake a feasibility study of personalised dietary intervention in select cohort of patients.
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Community cohort | Active Comparator | Participants from the Ehlers Danlos UK society community who low diet quality |
|
| Clinic cohort | Active Comparator | Participants from a Tertiary Neurogastroenterology clinic who have low die quality |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Dietician advice | Behavioral | Personalised dietetic advice |
|
| Measure | Description | Time Frame |
|---|---|---|
| Number of patients | Number of patients who adhere to dietary recommendations based on acceptability of intervention and ease of delivery. | 3 months |
| Measure | Description | Time Frame |
|---|---|---|
| United Kingdom Diet Quality Index as calculated by the Scottish Collaborative Group Food Frequency Questionnaire (SCG FFQ) | 170- item semi-quantitative questionnaire, designed to assess the habitual diet of medium to large sized populations during the previous 3 months (higher score means better diet quality) | 3 months |
Not provided
Inclusion Criteria:
Exclusion Criteria:
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Queen Marys University London | London | United Kingdom |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| ID | Term |
|---|---|
| C536196 | Ehlers-Danlos syndrome type 3 |
| D043183 | Irritable Bowel Syndrome |
| D005767 | Gastrointestinal Diseases |
| ID | Term |
|---|---|
| D003109 | Colonic Diseases, Functional |
| D003108 | Colonic Diseases |
| D007410 | Intestinal Diseases |
| D004066 | Digestive System Diseases |
Not provided
Not provided
Tertiary clinic versus a selective community cohort
Not provided
Not provided
Not provided
Not provided
| Gastrointestinal Symptom Rating Scale (GSRS) |
13-item questionnaire assessing gastrointestinal symptoms across five domains (pain, bloating, constipation, diarrhoea and satiety) over a period of one week. (min:0 max: 7, higher score means worse symptoms) |
| 3 months |
| Hospital Anxiety and Depression Scale (HADS) | 14-item scale assessing symptoms of either anxiety or depression (min: 0 max: 21, higher score means worse anxiety or depression) | 3 months |
| Visceral Sensitivity Index (VSI) | 15-item measurement of gastrointestinal-specific anxiety (min: 0 max: 75, higher score means worse gastrointestinal specific anxiety) | 3 months |
| Patient Health Questionnaire-15 (PHQ-15) | 15-item questionnaire to assess the domain of somatic symptoms (min: 0 max: 30, higher score means worse somatic symptoms) | 3 months |
| Composite Autonomic Symptom Score (COMPASS-31) | 31-item score to assess for symptoms of autonomic nervous system disturbance (min: 0 max 100, higher score means worse autonomic symptoms) | 3 months |
| Short Form 6D version 2 (SF-6Dv2) | 6-item questionnaire to assess impact of physical symptoms on daily functioning and quality of life (ranges from 1 (full health) to -0.574 (worst health); 0 (death)) | 3 months |
| Resource Use Questionnaire | 16-item questionnaire to assess healthcare and health product utilisation over the preceding 3 months (no minimum / maximum, no score) | 3 months |