MS history and MS treatments and Expanded Disability Status Scale (EDSS) score will be recorded

Clinical assessment

Information processing speed (IPS) Working memory (WM) Executive functions (EF) Episodic memory (EM) Premorbid intelligence quotient (IQ) Multidomain or complex task

Classical cognitive evaluation of several domains:

Ecological evaluation

Patent reported outcomes (PRO's) : Beck Depression Inventory (BDI), European Quality of Life-5 Dimensions (EQ-5D-5L) for Health-Related Quality of Life (HRQOL), Multiple Sclerosis Impact Scale-29 Items (MSIS-29), French version of the Modified Fatigue Impact Scale (EMISEP) and State trait anxiety inventory (STAI).

Subjective cognitive deficits: Perceived Deficits Questionnaire (PDQ) and Cognitive Activities Questionnaire (DCAQ)

Patent reported outcomes (PRO's)

The Cognitive rehabilitation (CR) consists of weekly 45 minutes online individual session with the unblinded Speech Therapist.

Telerehabilitation : active procedure

Once per week over a 12-week period completed by daily online exercises performed by the patient 4 days a week.

Telerehabilitation : comparator procedure

Patients receive atezolizumab IV over 30-60 minutes on day 1, bevacizumab IV over 30-90 minutes on day 1, gemcitabine IV over 30 minutes on days 1 and 8, and cisplatin IV on days 1 and 8. Cycles repeats every 21 days in the absence of disease progression or unacceptable toxicity. Patients undergo CT or MRI throughout the trial. Patients undergo blood specimen collection on study.

Atezolizumab

Bevacizumab

Biospecimen Collection

Cisplatin

Computed Tomography

Conventional Magnetic Resonance Imaging

Gemcitabine Hydrochloride

Patients receive atezolizumab IV over 30-60 minutes on day 1, and gemcitabine IV over 30 minutes and cisplatin IV on days 1 and 8. Cycles repeats every 21 days in the absence of disease progression or unacceptable toxicity. Patients undergo CT or magnetic resonance imaging MRI throughout the trial. Patients undergo blood specimen collection on study.

Classical rehabilitation program (stretching, strenght, balance and coordination exercise) for fifty minutes.

Muscle strengthening in all four extremities; strengthening of trunk and abdominal muscles; providing and maintaining joint range of motion; independent and safe standing, turning, and stepping; able to walk alone on flat ground and on different surfaces (such as sloping-handicapped-soil-stone-sand-grass-rough-stepped)

classical rehabilitation

Deep sensory asisted rehabilitation program (stretching, strenght, balance and coordination and deep sensory exercises) for fifty minutes.

A new PTR plan called "deep sensory assisted rehabilitation" was created: it was aimed to develop a sensory and deep sense in the adult age group by making use of sensory integration exercises, which are mostly applied in the childhood age group. Whether these exercises are effective on walking and balance will be evaluated. Patients will be dressed in a vest with an equally distributed weight of 4-6 kg according to their weight, and exercises will be done while walking and standing.

\- the so-called "deep sensory pathway"; The patients will be given standing and walking exercises on sand and stone floors, soft floors made of sponge, hard plastic floors with different sizes of grooves and shapes, and hot-cold floors formed by placing hot packs and cold packs.

Deep sensory assisted rehabilitation

All participants will first receive a massage and then be manipulated with the spinal manipulation technique.

All participants will first receive a massage to relax the muscles and then be manipulated with a spinal manipulation technique.

manipulation with classical massage and spinal manipulation technique

Only women were included to exclude the effects of different hormonal structures and gender on pain.

액응고인자 제제의 개발과 그것의 대량 생산이 가능하게 되었기 때문입니다.오늘날 혈우병의 종류는 다양합니다. 고전적 혈우병으로 불리는 혈우병 A (제Ⅷ 인자 결핍), 혈우병 B (제 Ⅸ 인자 결핍, ‘크리스마스 병’으로 알려짐),

제8인자결핍

Hemophilia

혈우병

A형 혈우병

제9인자결핍

고전적 혈우병

레어노트에 환자 모임 등록

회원 모집 중

질환 리포트 발행 완료

PKU 환아를 위한 정보 교환과 친목을 돈독하게 하기 위해 만들어진 모임입니다. 

<dl class="v3-editor-content-dictionary">
<dt>페닐케톤뇨증이란</dt>
<dd>페닐케톤뇨증은 단백질 속에 함유된 페닐알라닌을 분해하는 효소가 결핍되어 체내에 페닐알라닌이 축적되어 증상이 나타나는 대사 질환입니다.</dd>
<dd> </dd>
<dd><a href="rarenote://MedicalNewsDetail?id=2210e469-ece4-4e27-a6e1-b7f12112c96d">질환에 대해 더 알아보기</a></dd>
</dl>
 
희귀질환협회(PKU사랑)는 페닐케톤뇨증으로 진단받은 환자, 보호자와 소통할 수 있는 공간입니다. 식단 및 레시피, 최신 뉴스 공유 등 정보 교류를 주로 진행하며, 매년 여름 'PKU 가족성장 캠프'도 진행합니다. 협회의 안정적인 운영과 회원 공동의 권리와 권익 마련을 위해 회비 및 기부금을 받고 있습니다.

질환 정보

혈우병

혈우병

혈우병

혈우병

임상시험 현황

임상 평가, 여러 도메인의 고전적 인지 평가: 생태학적 평가, 특허 보고 결과(PRO), 원격 재활: 활성 절차, 원격 재활: 비교 절차

아테졸리주맙, 베바시주맙, 생체 검체 채취, 시스플라틴, 컴퓨터 단층촬영, 고전적 자기공명영상, 젬시타빈 염산염

심층 감각 보조 재활, 고전적 재활

고전적 마사지와 척추 조작 기술을 이용한 조작

환자 모임 정보