Greetings
The Tokai University Intractable Disease Research Center was established in 1988 after receiving designation from Kanagawa Prefecture.
Intractable diseases are diseases with unknown causes and no established treatments. They can develop chronically and can cause aftereffects, placing a significant economic and psychological burden on patients. Kanagawa Prefecture has designated four base hospitals within the prefecture, established the Intractable Disease Treatment Research Center, and subsidized its operation to support patients with intractable diseases by promoting research into the treatment and Intractable Disease Research Center intractable diseases, providing medical consultations for patients and their families, and training medical professionals. Currently, the Center is operated as a commissioned project by Kanagawa Prefecture, but in the future, intractable disease medical system reforms will see the establishment of base hospitals for intractable disease medical care within the prefecture. Under this new system related to the reform of intractable disease countermeasures, we will provide the latest information to patients, their families, and medical professionals.
Director of Intractable Disease Research Center
Kenji Oku
Features
Intractable diseases are illnesses with unknown causes for which no treatment has yet been established. They are chronic and can leave lasting after-effects, resulting in significant financial and mental burdens. Intractable diseases include a wide range of conditions, such as collagen diseases (e.g., systemic lupus erythematosus, scleroderma, dermatomyositis), blood disorders (e.g., aplastic anemia), neurological disorders (e.g., amyotrophic lateral sclerosis, myasthenia gravis), digestive disorders (e.g., ulcerative colitis, Crohn's disease), liver diseases, heart diseases, lung diseases, skin diseases, kidney diseases, endocrine diseases, bone and joint diseases, and genetic disorders. Many of these are designated as specific diseases by the government, making them eligible for medical assistance. As of April 2025, there are 348 diseases eligible for medical assistance.
Kanagawa Prefecture has designated four base hospitals within the prefecture, established intractable disease treatment research centers, and subsidized their operation, with the aim of supporting patients with intractable diseases by promoting research into the treatment and Intractable Disease Research Center, providing medical consultations for patients and their families, and training for medical professionals. Our center is one of these centers.
The center also provides treatment for intractable diseases, conducts treatment research, provides medical consultations, and holds lectures. Medical treatment for each disease is provided by specialized departments such as Rheumatology, Hematology-oncology, Department of Neurology, Gastroenterology, Cardiology, Respiratory Medicine, Department of Renal Endocrinology and Metabolism, and metabolism, plastic surgery, and dermatology. Medical consultations are handled through the hospital's General Consulting Office, where social workers work with doctors, pharmacists, and registered dietitians to answer questions from patients and their families.
We hold lectures twice a year called "Incurable Disease Lectures" aimed at patients, their families, and medical professionals, providing the latest information on incurable diseases that will be useful for treatment and convalescence.
Rheumatology
Rheumatology diagnoses and treats many intractable diseases that have been designated as specific diseases by the government and are eligible for medical assistance. Representative diseases include systemic lupus erythematosus, systemic sclerosis, polymyositis/dermatomyositis, and vasculitis syndrome. These diseases are characterized by varying degrees of damage to organs throughout the body, making advances in diagnostic and therapeutic methods essential to alleviating symptoms. Furthermore, because treatment is long-term, continuous support is also necessary for patients and their families.
Department of Neurology
Many of the diseases treated by Department of Neurology are intractable diseases, and these are designated as specific diseases by the government, making them eligible for medical assistance. Representative diseases include Parkinson's disease, amyotrophic lateral sclerosis (ALS), myasthenia gravis, multiple sclerosis/neuromyelitis optica (NMOSD), chronic inflammatory demyelinating polyneuropathy (CIDP)/multifocal motor neuropathy (MMN), spinocerebellar degeneration (SCD), and multiple system atrophy (MSA). Many of these diseases previously had no treatment, but in recent years, the emergence of new biological agents has increased the number of treatable diseases. Furthermore, since treatment is long-term, continuous support for patients and their families is also necessary.
Gastroenterology
Gastroenterology provides medical care for intractable diseases of the digestive system that are eligible for national medical subsidies. Representative diseases include ulcerative colitis, which has the largest number of registered patients among all designated diseases, as well as related diseases such as Crohn's disease, primary biliary cholangitis, and several liver diseases, including autoimmune hepatitis. These diseases often require long-term treatment and management, and there is a need for support for patients and their families, as well as research and advances in further diagnostic and therapeutic methods. We Gastroenterology are committed to playing a part in this effort.
Department of Cardiology
Cardiology provides specialized diagnosis and treatment, primarily for cardiovascular diseases designated as intractable diseases by the government and eligible for medical expense subsidies. Representative diseases include various cardiomyopathy conditions such as cardiac sarcoidosis, cardiac amyloidosis, cardiac Fabry disease, obstructive hypertrophic cardiomyopathy, and dilated cardiomyopathy. In recent years, we have been providing individualized treatment based on precise evaluations. In particular, the introduction of new drug therapies for cardiac amyloidosis and the availability of new therapeutic drugs for obstructive hypertrophic cardiomyopathy, in addition to conventional drug therapies and catheter treatments such as percutaneous transluminal septal myocardial ablation (PTSMA), are expected to improve treatment outcomes even for diseases where treatment options were previously limited.
Furthermore, as patients who received treatment for congenital heart diseases such as Tetralogy of Fallot and transposition of the great arteries during childhood reach adulthood, the number of cases requiring long-term specialized management as adult congenital heart disease is increasing, and we are providing medical care in cooperation with relevant departments.
Furthermore, in collaboration with Respiratory Medicine, we provide multidisciplinary treatment for pulmonary hypertension, including chronic thromboembolic pulmonary hypertension and pulmonary arterial hypertension. For chronic thromboembolic pulmonary hypertension, a treatment strategy combining drug therapy with balloon pulmonary angioplasty (BPA) is expected to improve symptoms and prognosis.
We provide multidisciplinary medical care that appropriately combines drug therapy, catheter treatment, surgical treatment, and device treatment, and we offer the best possible treatment for each patient in collaboration with various professionals.
Respiratory Medicine
Idiopathic interstitial pneumonia is the most common designated intractable disease treated in Respiratory Medicine. Starting in 2024, the diagnostic criteria and severity classification will be revised, making it easier to receive medical assistance. Therefore, patients receiving home oxygen therapy or taking expensive anti-fibrotic drugs (pirfenidone, nintedanib) should consult with their doctor. Other designated intractable diseases treated in Respiratory Medicine include sarcoidosis, lymphangioleiomyomatosis, autoimmune pulmonary alveolar proteinosis, ciliary dyskinesia syndrome, eosinophilic granulomatosis with polyangiitis, and obesity-hypoventilation syndrome.
Department of Renal Endocrinology and Metabolism
Some of the diseases treated in Department of Renal Endocrinology and Metabolism are designated as intractable diseases by the government and are eligible for medical expense subsidies.
Representative diseases in the field of kidney disease include IgA nephropathy, polycystic kidney disease, Alport syndrome, rapidly progressive glomerulonephritis (such as ANCA-associated vasculitis), anti-glomerular basement membrane nephritis, primary nephrotic syndrome, primary membranoproliferative glomerulonephritis, Henoch-Schönlein purpura nephritis, and IgG4-related disease. These diseases are characterized by varying degrees of damage not only to the kidneys but also to various organs throughout the body, making appropriate diagnosis, including renal biopsy, and early therapeutic intervention crucial.
Representative endocrine disorders include pituitary ADH deficiency, pituitary TSH hypersecretion, pituitary PRL hypersecretion, Cushing's disease, pituitary gonadotropin hypersecretion, pituitary growth hormone hypersecretion (acromegaly), and anterior pituitary hypofunction. Since these disorders manifest as symptoms due to abnormal hormone secretion, hormone replacement therapy or hormone suppression therapy is used.
Representative diseases in the field of diabetes and metabolism include mitochondrial diseases and familial hypercholesterolemia (homozygous). Since these diseases can cause varying degrees of damage to various organs throughout the body if left untreated, early diagnosis and treatment tailored to the specific condition are crucial.
dermatology
dermatology diseases include autoimmune bullous diseases such as pemphigus and pemphigoid, severe drug eruptions such as Stevens-Johnson syndrome and toxic epidermal necrolysis, pustular psoriasis, neurofibromatosis, and idiopathic acquired generalized anhidrosis, all of which are designated as intractable diseases. Many patients suffer from these diseases, the causes of which have not yet been elucidated, or the causes of which have been elucidated but which are severe and intractable. While patient treatment is ongoing, we hope that medical advances will lead to the elucidation of the causes and the development of new treatments.