Study 2023-80-7 (NEED) Identifying the unmet needs related to sickle cell disease

Unmet needs related to sickle cell disease: your voice matters!

A new study has been launched to explore the experiences and needs of teenagers and adults living with sickle cell disease in Belgium and France.

Why this study?

Much too often, decisions about developing new treatments or reorganising care are made without sufficiently taking patients’ needs into account. 

With this study, we want to better understand what people with sickle cell disease consider important. The results will help show policymakers, researchers, and industry what should be prioritised in care and in research, and how to better align it with real needs.

By filling in this survey, you will help improve the care for people living with sickle cell disease.

Who can take part?

• All adults with sickle cell disease 
• Adolescents aged 12 or over with sickle cell disease and their parents
• Friends or relatives of adult patients who are unable to complete the questionnaire themselves (the respondent then answers on behalf of the patient)
• (The person affected by sickle cell disease must live in Belgium)

The survey for patients living in France will follow soon!

How can you take part?

Please complete the online questionnaire via the link: 🔗 https://tinyurl.com/KCE-drepa

• Completing it takes 40 minutes
• You can pause and continue later
• Participation is completely anonymous
• A paper version is available on request:
  • ✉️ renaud.vangoethem@kce.be
  • 📞 +32 495 49 13 77

After completing the questionnaire, can also volunteer for an (online) interview with a researcher. 

👉 More information on the NEED-project: https://health-needs.eu/