id	author	title	date	pages	extension	mime	words	sentences	flesch	summary	cache	txt
cord-351349-ypaevb8b	van Koningsbruggen-Rietschel, Silke	SARS-CoV2 disrupts clinical research - the role of a rare disease-specific trial network	2020-08-07		.txt	text/plain	893	49	49	Rare disease patients may suffer delayed access to new drugs as SARS-CoV-2 is disrupting clinical trials. Here we present the results of several surveys performed within the European CF Society Clinical Trials Network (ECFS-CTN) that aimed to assess how the pandemic disrupted CF clinical trials and to rapidly share useful information about operational mitigation measures by clinical trial teams across Europe. Licensing and reimbursement of CFTR modulators varies by country and around 450 CF patients across ECFS-CTN sites currently access CFTR modulators via clinical trials. Four surveys were answered by clinical trial investigators and research coordinators in the 58 ECFS-CTN sites between March-May 2020 (Weeks 1, 2, 4 and 6). The Week 1 survey was performed just before initial FDA and EMA guidance in mid-March 2020 [3, 4] and showed that many sites had already prohibited new enrolment into trials and onsite monitoring visits ( Table 1) .	./cache/cord-351349-ypaevb8b.txt	./txt/cord-351349-ypaevb8b.txt