Diet and Hereditary Haemorrhagic Telangiectasia

NCT ID: NCT01692015

Last Updated: 2024-03-29

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

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Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

50 participants

Study Classification

INTERVENTIONAL

Study Start Date

2011-04-30

Study Completion Date

2016-09-30

Brief Summary

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Hereditary Haemorrhagic Telangiectasia (HHT) affects 1 in 5,000 people. The purpose of this study is to provide data regarding the diet and nosebleed frequency using a questionnaire.

This will be filled in by people with HHT.

The questionnaire has been designed in paper format.

Detailed Description

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Hereditary Haemorrhagic Telangiectasia (HHT) affects 1 in 5,000 people, usually causing nosebleeds, skin blood spots, and/or anaemia as a result of bleeding from the nose or gut. The majority of people with HHT also have abnormal blood vessels (arteriovenous malformations) in internal organs such as the lungs, liver and brain. Management of this multisystem disorder is highly challenging.

The Lead Applicant has spent 20 years working on this rare disease, and identified multiple areas where more evidence is required to assist clinicians and patients with this lifelong condition. A particular issue is whether the diet influences HHT or its complications in any way.

In this study, people will fill in two questionnaires, one giving details of their diet, and another details of their nosebleeds. They will also be asked to consider participating in an accessory study arm which includes weighing food for one week and providing a food diary, in addition to having a single set of blood test.

Conditions

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Hereditary Haemorrhagic Telangiectasia (HHT)

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

SINGLE_GROUP

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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Diet and nosebleed questionnaire

Participants will only be required to fill in two paper questionnaires, one on dietary history, and one on nosebleed severity.

Group Type EXPERIMENTAL

Questionnaire on dietary history

Intervention Type OTHER

Questionnaire on nosebleed severity

Intervention Type OTHER

Weighed food diary arm

Participants will be required to weigh their food for one week to generate a food dairy, and have a single blood test, in addition to filling in the two paper questionnaires, one on dietary history, and one on nosebleed severity.

Group Type EXPERIMENTAL

Questionnaire on dietary history

Intervention Type OTHER

Questionnaire on nosebleed severity

Intervention Type OTHER

One week food diary generated by weighing foods

Intervention Type OTHER

Blood tests for full blood count, albumin, and indices of nutritional status

Intervention Type PROCEDURE

Interventions

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Questionnaire on dietary history

Intervention Type OTHER

Questionnaire on nosebleed severity

Intervention Type OTHER

One week food diary generated by weighing foods

Intervention Type OTHER

Blood tests for full blood count, albumin, and indices of nutritional status

Intervention Type PROCEDURE

Eligibility Criteria

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Inclusion Criteria

* A diagnosis of hereditary Haemorrhagic Telangiectasia (HHT)

Exclusion Criteria

* Unable to provide informed consent
* Presence of another major organ disorder that may affect nutritional status, such as inflammatory bowel disease, or celiac disease.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Imperial College London

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Claire L Shovlin, PhD FRCP

Role: PRINCIPAL_INVESTIGATOR

Imperial College London

Locations

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HHTIC London, Hammersmith Hospital, Imperial College Healthcare NHS Trust

London, , United Kingdom

Site Status

Countries

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United Kingdom

References

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Finnamore H, Le Couteur J, Hickson M, Busbridge M, Whelan K, Shovlin CL. Hemorrhage-adjusted iron requirements, hematinics and hepcidin define hereditary hemorrhagic telangiectasia as a model of hemorrhagic iron deficiency. PLoS One. 2013 Oct 16;8(10):e76516. doi: 10.1371/journal.pone.0076516. eCollection 2013.

Reference Type RESULT
PMID: 24146883 (View on PubMed)

Finnamore HE, Whelan K, Hickson M, Shovlin CL. Top dietary iron sources in the UK. Br J Gen Pract. 2014 Apr;64(621):172-3. doi: 10.3399/bjgp14X677761. No abstract available.

Reference Type RESULT
PMID: 24686867 (View on PubMed)

Chamali B, Finnamore H, Manning R, Laffan MA, Hickson M, Whelan K, Shovlin CL. Dietary supplement use and nosebleeds in hereditary haemorrhagic telangiectasia - an observational study. Intractable Rare Dis Res. 2016 May;5(2):109-13. doi: 10.5582/irdr.2016.01019.

Reference Type RESULT
PMID: 27195194 (View on PubMed)

Finnamore H, Silva BM, Hickson BM, Whelan K, Shovlin CL. 7-day weighed food diaries suggest patients with hereditary hemorrhagic telangiectasia may spontaneously modify their diet to avoid nosebleed precipitants. Orphanet J Rare Dis. 2017 Mar 28;12(1):60. doi: 10.1186/s13023-017-0576-6.

Reference Type RESULT
PMID: 28347346 (View on PubMed)

Other Identifiers

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CLS21

Identifier Type: -

Identifier Source: org_study_id

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