TY  - JOUR
AU  - D'Agnolo, Hedwig Ma
AU  - Kievit, Wietske
AU  - Andrade, Raul J
AU  - Karlsen, Tom Hemming
AU  - Wedemeyer, Heiner
AU  - Drenth, Joost Ph
PY  - 2015
DO  - 10.1177/2050640615618042
SN  - 2050-6406
UR  - https://hdl.handle.net/10668/26345
T2  - United European gastroenterology journal
AB  - The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients....
LA  - en
KW  - Clinical registry
KW  - database
KW  - gastrointestinal disease
KW  - liver disease
KW  - liver transplantation
KW  - practical guide
KW  - rare diseases
KW  - rare liver disorders
KW  - registry design
TI  - Creating an effective clinical registry for rare diseases.
TY  - research article
VL  - 4
ER  -