Freedom of Information Request: FOI 0417
University Hospitals Birmingham NHS Foundation Trust (UHB) completed a merger by acquisition of Heart of England NHS Foundation Trust (HEFT) on 1st April 2018. UHB includes Birmingham Heartlands Hospital, the Queen Elizabeth Hospital Birmingham, Solihull Hospital and Community Services, Good Hope Hospital in Sutton Coldfield and Birmingham Chest Clinic.
Due to historical differences in data collection/reporting across UHB and the former Heart of England NHS Foundation Trust some responses have been provided by hospital site.
Queen Elizabeth Hospital
Q1. Within your trust how many patients have been treated, in the past 3 months [latest 3 months available] for Fabry Disease?
53 patients receiving ERT or chaperone treatment
Q2. Of these patients [from question 1], how many have been treated with the following [please state the number per treatment]
Replagal (agalsidase alpha)
25
Fabrazyme (agalsidase beta
11
Galafold (migalastat)
17
Other [please state which treatments]
Not applicable
Q3. Within your trust how many patients have been treated, in the past 3 months [latest 3 months available] for Gaucher’s Disease?
9
Q4. Of these patients [from question 3], how many have been treated with the following [please state the number per treatment]
VPRIV (velaglucerase alfa)
Cerezyme (imiglucerase)
Cerdelga (eliglustat)
Zavesca (miglustat)
Other [please state which treatments]
The Trust codes both Fabry and Gouchers disease the same. Therefore, the answer is the same as Q2.
Q5. If you are unable to link diagnosis and treatment, please state the number of patients on each of the following treatments;
Replagal (agalsidase alpha)
Fabrazyme (agalsidase beta)
Galafold (migalastat)
VPRIV (velaglucerase alfa)
Cerezyme (imiglucerase)
Cerdelga (eliglustat)
Zavesca (miglustat)
Not applicable
Heartlands, Good Hope and Solihull Hospital
Heartlands, Good Hope and Solihull Hospital are not LSD centres. Therefore no patient with Lysosomal Storage Disorder has been treated
Q1. Within your trust how many patients have been treated, in the past 3 months [latest 3 months available] for Fabry Disease?
0
Q2. Of these patients [from question 1], how many have been treated with the following [please state the number per treatment]
Replagal (agalsidase alpha)
Fabrazyme (agalsidase beta)
Galafold (migalastat)
Other [please state which treatments]
0
Q3. Within your trust how many patients have been treated, in the past 3 months [latest 3 months available] for Gaucher’s Disease?
0
Q4. Of these patients [from question 3], how many have been treated with the following [please state the number per treatment]
VPRIV (velaglucerase alfa)
Cerezyme (imiglucerase)
Cerdelga (eliglustat)
Zavesca (miglustat)
Other [please state which treatments]
0
Q5. If you are unable to link diagnosis and treatment, please state the number of patients on each of the following treatments;
Replagal (agalsidase alpha)
Fabrazyme (agalsidase beta)
Galafold (migalastat)
VPRIV (velaglucerase alfa)
Cerezyme (imiglucerase)
Cerdelga (eliglustat)
Zavesca (miglustat)
0
