Clinical trials: Parents’ experiences

Steve took part in Cohort Asthma Study after the birth of his son. Study continues and his son has now taken part in the second stage of the study to look at allergies.

John is married with four children. John left full time employment to become a full time carer to his daughter Chloe who has cerebral palsy and global developmental delay and his remaining children. John describes himself as White British.

Emma is aged 42 years, divorced, White British and mother of two children. Her son has experienced seizures since the age of nine months and was diagnosed with Dravet Syndrome at the age of 14 years. Emma set up and runs the Charity Matthew's Friends.

Alison, aged 49 years, put her career on hold to care for her son who was diagnosed with Cystic Fibrosis soon after birth; he is now 22. Alison now works part time in a School and lives with her husband and second son who is a carrier of CF.

Jane, aged 41 years, is White British and works full time in Primary School Education. She lives with her husband and their daughter who is 13 years of age. Their daughter was diagnosed with Juvenile Diabetes at the age of 11.

Kathryn is aged 39 years, is White British, married with two children and has full-time employment in the health sector. Her 14 year old daughter was diagnosed with diabetes at the age of 11.

Laura is 32 years of age, married and describes herself as White British and lives with her husband and two children ages four months and four years. Laura works full time for local government and is currently on maternity leave.

Jo is aged 28 years, married and is a full time housewife. Jo has two children. Her eldest son is 8 years old and was diagnosed with having migraines aged 6.

Lucinda, aged 37 years, is a single mother to her son Toby aged 10 years. Lucinda describes herself as White British as works fulltime in the legal profession.

Vicky is aged 39 years, is White British, married with three children all under 12 and has full-time employment. Her 9 year old daughter was diagnosed with diabetes at the age of 2.

Paul is aged 29 years, is White British, a full time homemaker and lives with his son aged 8 years.

Gary, aged 47, is married with two children. He describes himself as White British and works part-time. His son was diagnosed with diabetes at the age of four years, he is now 13.

Sandra aged 46 years is a full time housewife. She has five children. One of her daughters was diagnosed with juvenile dermatomyositis, a rare condition that affects children under the age of 18 years.

Nutan is Asian Indian, aged 37 years, married and works part time in the retail trade. Her daughter aged five years was diagnosed with diabetes at age 3 years.

Ann aged 43, is White British, lives with her son and daughter, and works part-time. Her daughter, Emily is aged 12, and was diagnosed with Grave's disease when she was 11. Grave's disease is a rare condition in young people and means that Emily has an overactive thyroid.