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Authors
Collin-Histed, Tanya http://orcid.org/0000-0002-5581-9609
Stoodley, Madeline
Beusterien, Kathleen http://orcid.org/0000-0001-7786-5422
Elstein, Deborah http://orcid.org/0000-0001-7092-0126
Jaffe, Dena H.
Revel-Vilk, Shoshana
Davies, Elin Haf
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Article History
Received: 4 December 2022
Accepted: 11 July 2023
First Online: 21 July 2023
Declarations
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: Per the UK National Institute for Health Research (NIHR) [weblink: Do I need ethical approval to run an involvement activity?—SPCR (nihr.ac.uk)], Ethics approval was not required for this activity, which was to ensure that design of new Gaucher disease registry involves expert, patient, and caregiver involvement. All participants were required to indicate their voluntary consent to participate on the interviews before they were allowed to proceed.
: Not-applicable.
: KB and DJ are employed by Cerner Enviza, an Oracle company which is assisting the International Gaucher Alliance with the implementation of the Gaucher disease registry. Dr Elin Haf Davies is employed by Aparito and owns stock options and Aparito deliver a contract on behalf of Cerner Enviza. Tanya Collin-Histed (TCH) is employed by the International Gaucher Alliance (IGA). The IGA receive funding from several pharmaceutical companies involved in the development and manufacturing of medicines, to support their global work programme. TCH as the CEO of the IGA participates in several advisory boards, conferences, and meetings. At the time of submitting this manuscript Madeline Stoodley was employed by aparito (she was not an employee of aparito at the time of undertaking interviews with the patient and caregiver community) and has since left aparito, she is a volunteer for the International Gaucher Alliance (IGA). S.R.-V. received research grants, speaker fees, and travel support from Pfizer, Sanofi Genzyme, and Takeda/Shire.
