2.2. Severity scores

2.2 Severity scores

It is important for families to know as early as possible how much - how severely - having Pitt-Hopkins syndrome will affect their child and his or her family. This is not the same for each person with Pitt-Hopkins. Before now, nobody has described such a 'severity score'.  

According to us, families should be asked which differences of the body, mind and behavior have the greatest impact on the lives of individuals with Pitt-Hopkins and their families. These make up the criteria for the severity score. We feel it would be best to organize such a list by linking each difference as much as possible to the change in the DNA that caused it.(R2).