Development of a Core Outcome Set for Growth Hormone Therapy in Children with Growth Hormone Deficiency

We aim to develop a consensus on what are the best outcome measures in growth hormone therapy in children with growth hormone deficiency. This will enable us to have a standardised approach in reporting and measuring/ publishing outcomes and promote benchmarking of clinical care across different centres. Ultimately it will help improve patient care.

Contributors

Principal Investigator:
Dr Xanthippi Tseretopoulou
Clinical Research Fellow
Developmental Endocrinology Research Group
Royal Hospital for Children, Glasgow
xanthippi.tseretopoulou@glasgow.ac.uk


Supervisor:
Professor S Faisal Ahmed
Samson Gemmell Chair of Child Health
Developmental Endocrinology Research Group
Royal Hospital for Children, Glasgow
Faisal.Ahmed@glasgow.ac.uk

CO-INVESTIGATOR(S)

Dr Suet Chin Cheng
Consultant Paediatric Endocrinologist
Honorary Clinical Senior Lecturer
CSO NRS Clinical Researcher
Royal Hospital for Children, Glasgow
suetching.chen@ggc.scot.nhs.uk

Dr Angela Lucas-Herald
NES/CSO Clinical Lecturer in Child Health
Developmental Endocrinology Research Group
Royal Hospital for Children, Glasgow
Angela.lucas-herald@glasgow.ac.uk

COLLABORATORS(S)
The GloBE-Reg GH SSG: https://globe-reg.net/gh-ssg/
The GloBE-Reg GH SSC: https://globe-reg.net/gh-ssc/

Further Study Information

Current Stage: Ongoing
Date: April 2023 - August 2024
Funding source(s): no funding at this point

Health Area

Disease Category: Endocrine & metabolic

Disease Name: Growth Hormone Deficiency

Target Population

Age Range: 16

Sex: Either

Nature of Intervention: Drug

Stakeholders Involved

- Clinical experts
- Conference participants
- Consumers (patients)
- Families
- Patient/ support group representatives
- Policy makers
- Researchers
- Service providers

Study Type

- COS for clinical trials or clinical research
- COS for practice

Method(s)

- Consensus conference
- Consensus meeting
- Delphi process
- Focus group(s)
- Interview
- Literature review
- Systematic review

The outcomes of the systematic review that we aim to conduct first will identify the common outcomes that are used in clinical practice to measure growth hormone therapy in children with growth hormone deficiency. Later, we will follow the following steps:
1)identify the stakeholders
2)recruitment for patients/consent
3)structures interviews with patients
4)develop initial questionnaire-based on the systematic review
5)agree on consensus and initial outcomes and pilot project
6)translation in other languages
7)1st round
8)2nd round
9)3rd round
10)data analysis
11)delphi meeting

dissemination

Linked Studies



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