SYSTEMS AND METHODS FOR MANAGING TREATMENT OF AN ORPHAN DISEASE

• US 20130166313A1
• Filed: 04/01/2011
• Published: 06/27/2013
• Est. Priority Date: 04/02/2010
• Status: Abandoned Application

• Current Assignee: Shire Human Genetic Therapies, Inc. (Shire plc)
• Original Assignee: Shire Human Genetic Therapies, Inc. (Shire plc)
• Inventors: Kitfield, Edward, Souza, Marcio, Kalyanam, Karthik, Subramanian, Sriram
• Application Number:
  US13/638,986
• Publication Number:
  US 20130166313A1
• Time in Patent Office: Days
• US Class Current: 705/2
• CPC Class Codes: G06Q 10/10 Office automation; Time management
• CPC Class Codes: G16H 20/10 relating to drugs or medications, e.g. for ensuring correct administration to patients
• CPC Class Codes: G16H 20/30 relating to physical therapies or activities, e.g. physiotherapy, acupressure or exercising
• CPC Class Codes: G16H 40/20 for the management or administration of healthcare resources or facilities, e.g. managing hospital staff or surgery rooms

Abstract

A system for managing treatment of an orphan disease of a patient by a user includes a mobile device and a program stored thereon. The mobile device is constructed and adapted to communicate with at least one server. The program stores one or more parameters related to the treatment of the orphan disease, tracks the parameters, and communicates information related to the treatment of the orphan disease with a health care provider, a company, and/or a case manager.

Claims

1. A system for managing treatment of an orphan disease of a patient by a user, the system comprising:

a mobile device including a processor and a memory coupled to the processor, the mobile device constructed and adapted to communicate with at least one server; and

a program stored on the memory, the program executable by the processor and comprising;

a data storage module for storing one or more parameters related to the treatment of the orphan disease;

a tracking module for tracking the one or more parameters; and

a communications module for communicating information related to the treatment of the orphan disease with at least one of a health care provider, a company, and a case manager.

2. The system set forth in claim 1, wherein the mobile device is one of a smart phone having a wireless network device and a personal digital assistant having a wireless network device.

3. The system set forth in claim 1, wherein the information includes at least one of news, company alerts, and the one or more parameters.

4. The system set forth in claim 1, the program further comprising a calendar module for scheduling at least one of treatment administrations and appointments.

5. The system set forth in claim 4, wherein the information includes at least one of the treatment administrations and the appointments.

6. The system set forth in claim 1, wherein at least one of the one or more parameters and the information is displayed to the user in an interface of the mobile device.

7. The system set forth in claim 1, wherein the orphan disease is a lysosomal storage disorder.

8. The system set forth in claim 1, wherein the treatment includes at least one of enzyme replacement therapy, bone marrow transplantation, physical therapy, cord blood transplants, anticonvulsant medicine, adequate nutrition and hydration, techniques to keep airway open, gene therapy, controlling or reducing the symptoms associated with the orphan disease, nutrition supplements, physical therapy, speech therapy, surgery, cysteamine, sodium citrate, potassium and phosphorus supplements, conventional antipsychotic or antidepressant therapy, lithium salts, electroconvulsive therapy, spinal fusion, glucosylceramide synthase inhibitors, organ transplant, palliative treatment, a glycosylation independent lysosomal targeting (GILT) tagged human acid alpha-glucosidase (GAA), agalsidase beta, metoclopramide, dialysis, kidney transplantation, velaglucerase alfa, taliglucerase alfa, glucosylceramide synthase inhibitors, isofagomine tartrate, blood transfusion, joint replacement surgery, antibiotics, antiepileptics, bisphosphonates, substrate reduction therapy, corneal transplants, N-butyldeoxynojirimycin, proper nutrition and hydration, maintenance of clear airways, anticonvulsants, stem cell treatment, growth hormones, dental hygiene, physiotherapy, and hydrotherapy.

9. The system set forth in claim 1, wherein the one or more parameters includes parameter data acquired from a medical test of the patient.

10. The system set forth in claim 1, wherein the one or more parameters includes a parameter type, a parameter value, and a test date.

11. The system set forth in claim 10, wherein the parameter type is one of bone pain, hemoglobin level, liver volume, platelet count, and spleen volume.

12. A method for managing treatment of an orphan disease of a patient by a user using a mobile device, the method comprising:

storing, on a memory of the mobile device, one or more parameters related to the treatment of the orphan disease;

tracking the one or more parameters; and

communicating information related to the treatment of the orphan disease with at least one of a health care provider, a company, and a case manager.

13. The method set forth in claim 12, wherein the mobile device is one of a smart phone having a wireless network device and a personal digital assistant having a wireless network device.

14. The method set forth in claim 12, wherein the information includes at least one of news, company alerts, and the one or more parameters.

15. The method set forth in claim 12, further comprising scheduling at least one of treatment administrations and appointments.

16. The method set forth in claim 15, wherein the information includes at least one of the treatment administrations and the appointments.

17. The method set forth in claim 12, further comprising displaying, to the user in an interface of the mobile device, at least one of the one or more parameters and the information.

18. The method set forth in claim 12, wherein the orphan disease is a lysosomal storage disorder.

19. The method set forth in claim 12, wherein the treatment includes at least one of enzyme replacement therapy, bone marrow transplantation, physical therapy, cord blood transplants, anticonvulsant medicine, adequate nutrition and hydration, techniques to keep airway open, gene therapy, controlling or reducing the symptoms associated with the orphan disease, nutrition supplements, physical therapy, speech therapy, surgery, cysteamine, sodium citrate, potassium and phosphorus supplements, conventional antipsychotic or antidepressant therapy, lithium salts, electroconvulsive therapy, spinal fusion, glucosylceramide synthase inhibitors, organ transplant, palliative treatment, a glycosylation independent lysosomal targeting (GILT) tagged human acid alpha-glucosidase (GAA), agalsidase beta, metoclopramide, dialysis, kidney transplantation, velaglucerase alfa, taliglucerase alfa, glucosylceramide synthase inhibitors, isofagomine tartrate, blood transfusion, joint replacement surgery, antibiotics, antiepileptics, bisphosphonates, substrate reduction therapy, corneal transplants, N-butyldeoxynojirimycin, proper nutrition and hydration, maintenance of clear airways, anticonvulsants, stem cell treatment, growth hormones, dental hygiene, physiotherapy, and hydrotherapy.

20. The method set forth in claim 12, wherein the one or more parameters includes parameter data acquired from a medical test of the patient.

21. The method set forth in claim 12, wherein the one or more parameters includes a parameter type, a parameter value, and a test date.

22. The method set forth in claim 21, wherein the parameter type is one of bone pain, hemoglobin level, liver volume, platelet count, and spleen volume.

23. The method set forth in claim 12, further comprising displaying the one or more parameters on a display of the mobile device.

24. A computer readable storage medium embodying a program including instructions executable by a processor of a mobile device to execute the method of claim 12.

25-26. -26. (canceled)

27. A system for managing treatment of an orphan disease of a patient by a user, the system comprising:

a mobile device including a processor and a memory coupled to the processor, the mobile device constructed and adapted to communicate with at least one server; and

a program stored on the memory, the program executable by the processor and comprising;

a news module for receiving and displaying news related to the orphan disease, the news to be generated by a news provider and disseminated through the at least one server;

a calendar module for scheduling treatments of the orphan disease and/or health related appointments;

a tracking module for storing and displaying health related data of the patient; and

a support module for exchanging messages between the patient and a case manager through the at least one server.

28. The system set forth in claim 27, wherein the mobile device is one of a smart phone having a wireless network device and a personal digital assistant having a wireless network device.

29. The system set forth in claim 27, wherein the news module provides at least a news screen for displaying one or more headlines, a news feed screen for displaying a news story, and a company alert screen for displaying information generated by at least one of a company and a support service.

30. The system set forth in claim 27, wherein the calendar module stores and displays at least one appointment related to the treatment of the orphan disease.

31. The system set forth in claim 30, wherein the at least one appointment is at least one of a one time appointment and a bi-weekly appointment.

32. The system set forth in claim 27, wherein the health related data includes parameter data acquired from a medical test of the patient.

33. The system set forth in claim 32, wherein the parameter data includes a parameter type, a parameter value, and a test date.

34. The system set forth in claim 33, wherein the orphan disease is a lysosomal disease, and wherein the parameter type is one of bone pain, hemoglobin level, liver volume, platelet count, and spleen volume.

35. The system set forth in claim 27, wherein the tracking module further stores and displays a weight, an age, and a gender of the patient.

36. The system set forth in claim 27, wherein the tracking module displays parameter data in at least one of a tabular and a graphical format.

37. The system set forth in claim 27, wherein the support module stores and displays a list of case managers, the list of case managers including at least a plurality of case manager names.

38. The system set forth in claim 37, wherein the support module stores and displays a patient profile, the patient profile including a patient name, a patient street address, a patient telephone number, and a patient e-mail address.

39. The system set forth in claim 37, wherein the support module generates the messages based on the patient profile, the case manager, and a message type.

40. The system set forth in claim 39, wherein the message type is one of address change notification, insurance notification, and vacation notification.

41. A method for managing treatment of an orphan disease of a patient by a user using a mobile device, the method comprising:

scheduling, in a calendar stored on the mobile device, one or more appointments related to the treatment of the orphan disease; and

tracking, in a repository stored on the mobile device, one or more parameters acquired from a medical test of the patient, each of the one or more parameters including a parameter type, a parameter value, and a test date.

42. The method set forth in claim 41, further comprising receiving, through a network interface of the mobile device, and displaying, through a graphical user interface of the mobile device, one or more news items related to the orphan disease.

43. The method set forth in claim 42, wherein each of the one or more news items includes at least one of a news story and a company alert.

44. The method set forth in claim 41, further comprising communicating, through the network interface, one or more messages between the patient and a case manager.

45. The method set forth in claim 41, wherein each of the one or more appointments includes one of a one time appointment and a recurring appointment.

46. The method set forth in claim 41, wherein tracking one or more parameters includes:

prompting a user to select a parameter type;

in response to the parameter type being selected, prompting the user to enter the parameter value, the parameter representing a discrete measurement of one parameter of the patient;

in response to the parameter value being entered, storing the parameter type, the parameter value, and the test date in the repository;

prompting the user to request a history of the one or more parameters; and

in response to the history being requested, retrieving at least one of the one or more parameters from the repository, and displaying the retrieved parameter in a tabular or graphical format.

47. The method set forth in claim 41, wherein any one of the one or more messages is at least one of an address change notification, an insurance notification, and a vacation notification.