(duplicate) HealthTracker: Tracking ADHD Cohort-Sheffield v1
Research type
Research Database
IRAS ID
219698
Contact name
Valerie Harpin
Contact email
Research summary
Tracking Attention Deficit Hyperactivity Disorder Cohort- Sheffield (TrACS)
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
17/YH/0107
Date of REC Opinion
12 May 2017
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The TrAC-S Database will be used to collect and store information from patients undergoing assessment for, or with a diagnosis of, Attention Deficit Hyperactivity Disorder (ADHD)/Attention Deficit Disorder (ADD) and seen within children’s ADHD services within Sheffield.
Data collected will include:
1. NHS Number and month and year of birth;
2. Diagnostic code, including coexisting developmental/mental health conditions; 3. non-drug interventions e.g. behaviour management;
4. medication used, doses, any improvement and any side effects
5. Questionnaire data assessing core ADHD symptoms and coexisting developmental or mental health difficulties.Questionnaire data will be collected from children/young people, their carers, teachers and clinicians online in a non identifiable format and then imported to Sheffield Children’s NHS Foundation Trust systems and linked with clinical records to support patient care.
Patients/parents/carers will consent for their data to be used in one or more of the following ways:
1. collected and stored on the database for clinical use only;
2. anonymised and used in population-based ADHD research studies;
3. to identify the patient as belonging to a target group of interest for specific future studies and to agree to be contacted to be invited to be involved in these.Research programme
ADHD is a chronic condition affecting 3-5% of school-aged children and their families, with 1% severely affected. ADHD may adversely affect the child's behaviour, learning, social skills and mental health. Over 80% of affected individuals also have one or more additional developmental or mental health problem. Little is known about long-term outcomes for individuals with ADHD treated in the UK. Further information is vital to support this vulnerable group with appropriate and cost-effective services. This knowledge will benefit individuals, their families and the community. The TrAC-S database will provide a comprehensive citywide cohort of patients with ADHD treated by children’s services in Sheffield. This offers a unique opportunity to understand the diversity in diagnoses, coexisting conditions and population statistics of this group in a UK city. It is expected that the database will include 2000 individuals within the first 5 years, and will expand as new patients are added beyond this point. The database will enable the identification of suitable individuals to be contacted regarding potential participation in ongoing clinical trials about new and current management strategies. Data collection will continue during transition to adult services giving unique long-term outcome data for the full spectrum of ADHD and co-existing conditions.
Research database title
Tracking Attention Deficit Hyperactivity Disorder Cohort- Sheffield (TrACS)
Establishment organisation
Sheffield Children's NHS Foundation Trust
Establishment organisation address
CCRF, D Floor Stephenson Wing, Western Bank
Sheffield
S10 2TH