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Detail about our research

Purpose
Our main objectives are to raise the quality of life for HAM patients, to clarify the HAM disease state, and to develop new treatments as well as establishing a cure.


Target Individuals
Everyone diagnosed with HAM (currently only accepting Japanese residents)

 

Research Summary Figure


Schedule
The participating individuals are contacted once during the second half of the year by a representative from the HAM Patient Registration Center (Saint Marianna Medical University: Intractable Disease Treatment Research Center).


Information Regarding Program Sponsoring
A research representative in charge of registration with confirm details such as family background, symptoms, the existence or non-existence of treatments, etc. Depending on the situation, patient records or if possible a provision of information from the attending physician may be requested. The patient’s registration details are not required, and the extent of the patient’s cooperation is not a factor.

 

Information Included in the Registration Process

(A) Patient's Background
Name, birth-date, gender, postal code, postal address, contact address, the date when diagnosed with HAM and the doctor who performed the diagnosis, current medical treatment(s), medical history, (medical) complications

 

(B) Family Background and Living Situation
Occupation, employment status, the existence of non-existence of income, family structure, family members living with the patient, any public support being accepted, membership at any institution, the existence or non-existence of a handicapped certificate

 

(C) QOL Survery
Severity of the handicap, the degree of difficulty for living daily life, the degree of difficulty during excretion (Method for using the evaluation: SF36, IPEC, OABSS, Osame's motor impairment severity)

 

(D) Medical Treat and Exam Data (Records from the Patient's Attending Physician)
Medical treatment existence or non-existence as well as the details, blood test results, cerebrospinal fluid exam results, (medical) complications

Use of the Registered Information

After careful consideration to avoid specific personal information, the information given during the registration process will be used to analyze the natural course of HAM, the influence of the disease on daily life, and the effectiveness of medical treatments, among other things, and we will be clear as to what information is useful for researching the cure. All information will be used for no other purpose than to clarify the HAM disease state, develop new treatments, and establish a cure. If any findings are announced at academic conferences, there will by no means be any personal information exposed to the public.

 

Participation in this research (registration) is based on the patient’s free will, and if there is any desire to remove registered information, it can be done at any time by contacting the HAM Patient Registration center.

Registration Process (currently only accepting Japanese residents)
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This is supported by project “Research on Measures for Intractable Disease,” a matching fund subsidy from the Ministry of Health Labour and Welfare