This spring, a new Clinical Pathway for FD/MAS Care was published by the International Consortium of FD/MAS Researchers. This news is equally exciting for the patient community as it is for this renowned group of researchers and patient advocates who have worked on the Clinical Pathway project for several years. Along with other international patient groups, FDF has been fully engaged in writing the Clinical Pathway, ensuring that patient perspectives were taken into consideration.
The publication is exciting for patients because it offers clearer answers for diagnosing and treating FD/MAS.
In particular, the Clinical Pathway for FD/MAS care includes a series of accompanying documents that patients can print and use as guides. “We now have a patient checklist that can really empower patients to get the most out of their introductory visits with clinicians caring for FD/MAS,” explained Dr. Kassim Javaid of University of Oxford, who served as primary author** for the project.
Previously, FDF had directed patients to a treatment guidelines page (now updated) that offered a rough step by step follow up for complete FD/MAS care. Those treatment guidelines drew information from clinical research articles to make an easy to follow guide. The updated Clinical Pathway brings the research articles and “checklist” formats together to create a more comprehensive and thorough tool for patients and clinicians alike. “The new pathway has improved diagnosis guidelines as well as better guidelines for radiology, and orthopedic care,” said Dr. Javaid, “it’s also worth noting that there are a lot more quality of life issues addressed in this pathway as well.”
The quality of life issues addressed in the pathway are a result of the collaboration between Consortium researchers and patient advocacy groups such as FDF. “Several patient groups were involved in the writing process,” explained Dr. Javaid,. “Representatives from FDF in the United States, the patient group in Italy and FDSSUK in the UK were all a part of the writing process from the beginning drafts and really co-produced this document.” FDF’s own Deanna Portero as well as Lisa Heral, who serves on the FD/MAS Patient Registry Steering Committee are both listed as an author on the published piece and worked to make sure the checklist was both clear and comprehensive for patient needs.
Though the publication of the Clinical Pathway was the first deliverable aim of the Consortium, their work is an ongoing process.
“Now we’ll focus on translating and sharing the Pathway widely, as well as educating non-expert clinicians on care guidelines,” said Dr. Javaid. In the meantime, the Consortium hopes that the Pathway is useful to the patient community. “We’re keen to receive feedback on the finished product,” said Dr. Javaid. Be sure to check the list of accompanying documents, including the patient checklist attached to the research article when you make use of this resource.
Feel free to share your experience with the Clinical Pathway by emailing firstname.lastname@example.org with the subject line: Clinical Pathway.
** Other contributing authors include: Alison Boyce, Natasha Appelman-Dijkstra, Juling Ong, Patrizia Defabianis, Amaka Offiah, Paul Arunde, Nick Shaw, Valter Dal Pos, Ann Underhil, Deanna Portero, Lisa Heral, Anne-Marie Heegaard, Laura Masi, Fergal Monsell, Robert Stanton, Pieter Durk Sander Dijkstra, Maria Luisa Brandi, Roland Chapurlat, Neveen Agnes Therese Hamdy & Michael Terrence Collins.