An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken

Autor: Astrid Janssens, Danielle Drachmann, Kristy Barnes-Cullen, Austin Carrigg, Henrik Thybo Christesen, Becky Futers, Yvette Ollada Lavery, Tiffany Palms, Jacob Sten Petersen, Pratik Shah, Paul Thornton, Joseph Wolfsdorf

Publikováno v: Research Involvement and Engagement, Vol 10, Iss 1, Pp 1-15 (2024)

Abstract Background In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themsel

Externí odkaz: https://doaj.org/article/f8f4cef7cbb940a5b123b0b6e96f438d

Towards enhanced understanding of idiopathic ketotic hypoglycemia: a literature review and introduction of the patient organization, Ketotic Hypoglycemia International

Autor: Danielle Drachmann, Erica Hoffmann, Austin Carrigg, Beccie Davis-Yates, Valerie Weaver, Paul Thornton, David A. Weinstein, Jacob S. Petersen, Pratik Shah, Henrik Thybo Christesen

Publikováno v: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-11 (2021)

Abstract Background Idiopathic Ketotic hypoglycemia (IKH) is a diagnosis of exclusion. Although considered as the most frequent cause of hypoglycemia in childhood, little progress has been made to advance the understanding of IKH since the medical te

Externí odkaz: https://doaj.org/article/49e270f85bb449af8057226d59dae7fd

Ketotic hypoglycemia in patients with Down syndrome

Autor: Austin Carrigg, Danielle Drachmann, Henrik Thybo Christesen, David A. Weinstein, Jacob Sten Petersen

Publikováno v: JIMD Reports, Vol 62, Iss 1, Pp 70-73 (2021)
Drachmann, D, Carrigg, A, Weinstein, D A, Petersen, J S & Christesen, H T 2021, ' Ketotic hypoglycemia in patients with Down syndrome ', JIMD Reports, vol. 62, no. 1, pp. 70-73 . https://doi.org/10.1002/jmd2.12241
JIMD Reports

Background: Ketotic hypoglycemia (KH) without an identifiable underlying metabolic or hormonal disease is historically named idiopathic KH. The prevalence is unknown, but idiopathic KH is considered the most frequent cause of hypoglycemia beyond the

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::eb5b163b7c7e9bba97c2887581ca4b73
https://doaj.org/article/598744c01ba84884a24612bc93e2281a