Contact information
Type
Scientific
Primary contact
Ms Greta Westwood
ORCID ID
Contact details
Wessex Clinical Genetics Service
Princess Anne Hospital
Southampton
SO16 5YA
United Kingdom
+44 (0)2380 796168
greta.westwood@suht.swest.nhs.uk
Additional identifiers
EudraCT number
ClinicalTrials.gov number
Protocol/serial number
SUHT R&D ref: RHM CHI 0250 - UoS ref: 3348
Study information
Scientific title
Acronym
Study hypothesis
Primary care genetics education will increase the referral rate to clinical genetics and nurse counsellor genetics clinics in primary care will be acceptable to patients seen.
Ethics approval
Not provided at time of registration
Study design
Randomised controlled trial
Primary study design
Interventional
Secondary study design
Randomised controlled trial
Trial setting
Hospitals
Trial type
Screening
Patient information sheet
Condition
Family history of a genetic condition
Intervention
Randomised GP practices to receive genetics education and patients referred with trial GP practices to receive a genetics clinic appointment in primary or secondary care
Intervention type
Other
Phase
Not Specified
Drug names
Primary outcome measure
Education: GP referral rate to clinical genetics
Location: clinic attendance rate
Secondary outcome measures
Education: referral type, referral practice and attitudes to clinical genetics
Location: Patient satisfaction, patient clinic travel costs, NHS clinic costs, clinic waiting times, patients remaining in primary care
Overall trial start date
01/07/2002
Overall trial end date
01/05/2005
Reason abandoned (if study stopped)
Eligibility
Participant inclusion criteria
All patients referred to the Wessex Clinical Genetics Service (WCGS) registered with a trial GP practice. All patients of all ages. If a child is referred one parent/guardian will complete the questionnaire, both sexes, all ethic groups.
Participant type
Patient
Age group
Other
Gender
Both
Target number of participants
Referral rate 0.0003 per 18 months from a population of 523,262
Participant exclusion criteria
1. Any patient who has previously been seen by the WCGS
2. Non GP referrals will be excluded from the education comparison
3. Urgent and ward referrals will be excluded from the location comparison
4. Patients receiving a home visit as a pre-clinic contact will be excluded from the location comparison
Recruitment start date
01/07/2002
Recruitment end date
01/05/2005
Locations
Countries of recruitment
United Kingdom
Trial participating centre
Wessex Clinical Genetics Service
Southampton
SO16 5YA
United Kingdom
Sponsor information
Organisation
Southampton University Hospitals Trust and University of Southampton (UK)
Sponsor details
Research Governance Office
Legal Services
Rm 4033
Building 37
University Road
Southampton
SO17 1BJ
United Kingdom
+44 (0)2380 598848
greta.westwood@suht.swest.nhs.uk
Sponsor type
University/education
Website
Funders
Funder type
Government
Funder name
Genetics Policy Unit, Department of Health (UK)
Alternative name(s)
Funding Body Type
Funding Body Subtype
Location
Results and Publications
Publication and dissemination plan
Not provided at time of registration
Intention to publish date
Participant level data
Not provided at time of registration
Basic results (scientific)
Publication list
Results in http://www.ncbi.nlm.nih.gov/pubmed/16499680
Publication citations
-
Results
Westwood G, Pickering RM, Latter S, Lucassen A, Little P, Karen Temple I, Feasibility and acceptability of providing nurse counsellor genetics clinics in primary care., J Adv Nurs, 2006, 53, 5, 591-604, doi: 10.1111/j.1365-2648.2006.03760.x.