On behalf of ENERCA www.enerca.org, we would like to ask your assistance with creating a European Enzyme Epidemiological Geocode.
For this, we created a simple database for registration of hereditary hemolytic anemia caused by enzyme defects.This database was built in order to create a European wide Geocode, that can give insight in the prevalence of this type of rare anemia, but also in time to diagnosis and life expectancy.
We invite you to participate in this by answering a short questionnaire about the individual patients under your care who are diagnosed with hereditary hemolytic anemia. Individuals who complete one or more inclusions, will be listed as collaborators in Pubmed.
Please note that, because of confidentiality, only anonymized, generalized information will be used to update you on the results of this project and for possible publication.
Feel free to share this activity to your colleagues and ask them to participate.
On behalf of
Dr. P Bianchi, Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milano, Italy
Dr. M Mañú Pereira, Hospital Clinic of Barcelona, Spain
Dr. EJ van Beers, University Medical Center, Utrecht, The Netherlands
Dr. R van Wijk, University Medical Center, Utrecht, The Netherlands
Drs. Stephanie van Straaten
Instructions for completing questionnaire: