Calling All Sickle Cell Parent Carers and Health Professionals

Calling All Sickle Cell Parent Carers and Health Professionals

Join one of our online events this July, showcasing the findings to date of the ReSPoND study (Rethinking Strategies for Positive New-born Screening Result Delivery). 

You will receive a thank you voucher for taking part!

In 2018-19, over 10,000 babies were identified as being affected or being healthy carriers of a gene for one of the conditions new born babies are screened for, which include sickle cell disease, cystic fibrosis, metabolic diseases and hypothyroidism.  Parents’ agree to the blood test at the time of birth but many never expect a positive result. When a positive result occurs, a variety of ways are used to deliver the result but many parents complain about the manner in which the information is communicated to them. 

The Sickle Cell Society has been on the advisory group of a research project led by City University of London to determine effective and acceptable methods that healthcare professionals can communicate positive new born screening results to parents. 

You are invited to participate in one of several events:

 Purpose of the events:

  • To discuss our findings to date, including how the co-designed interventions can best be implemented in the NHS to benefit parents and families.
  • To discuss future research plans based on the findings of the study.

Who the events are open to:

The events are open to parents and carers of children affected by one of the 9 screened conditions currently included in the National NBS Programme as well as Screening Co-ordinators, Screening Nurse Specialists and Midwives involved in the NBS process.

Location: The events will be held online via Microsoft Teams.

Dates and Times:

Parents and carers:

  • Wed 1st July, 10.00 – 11.30 or;
  • Tues 7th July, 10.00 – 11.30.

Screening Co-ordinators, Screening Nurse Specialists and Midwives:

  • Mon 13th July, 10.00 – 11.30 or;
  • Wed 15th July, 10.00 – 11.30.

If you would like to join one of the sessions, please email with your preferred date. We look forward to seeing you there!

You can learn more about the study here: