Nutritional intervention: Routine postoperative oral nutritional supplements (ONS) will be provided, and patients with metabolic diseases such as diabetes will undergo strict glycemic control. Psychological intervention: Patients with a Hospital Anxiety and Depression Scale (HADS) score ≥ 8 will receive cognitive behavioral therapy (CBT), and those with a HADS score ≥ 11 will be referred for psychological consultation. Exercise intervention: Postoperative rehabilitation training will be guided according to different postoperative periods.

Early structured postoperative intervention encompassing nutrition, psychology, and exercise

* A single blood sample will be taken before initiation of the metastatic treatment line. The volume of total blood sampled is 34mL.
* A tumour sample (FFPE block already archived) from a metastasis (other than bone) if available or, failing this, from the primary breast tumour, will be sent to the sponsor in order to meet the objectives of the study.

Once the blood sample has been taken, patients will have completed their participation in the study.

For each patient included, the samples described below will be collected:

Participants receive a combined intervention consisting of Hand-Arm Bimanual Intensive Therapy Including Lower Extremities (HABIT-ILE) and Functional Strength Training (FST). Both components are delivered as an integrated, intensive motor learning-based program aimed at improving upper and lower limb function in children with SMA .Subject will participate in a HABIT-ILE + FST camp format for 6 hours/day, one day/week for 15 weeks.

Goal-directed, task-specific training for both the upper and lower extremity, and postural control with targeted strengthening exercises to enhance motor control and facilitate the achievement of functional goals

Combined Hand-Arm Bimanual Intensive Therapy Including Lower Extremities (HABIT-ILE) + functional strength training (FST)

Physicians will use Prioritizes Personalizes Prescribes Exercise (P3-EX), hosted by a web-based platform, to deliver P3-EX, an evidence-based personalized exercise prescription to improve cardiovascular disease (CVD) risk factors.

P3-EX will determine whether the patient needs medical clearance. P3-EX will score the patient's CVD risk factors using an adapted American Heart Association Life's Essential 8 cardiovascular health scoring system to determine the CVD risk factor posing the greatest risk. If ≥2 CVD risk factors are tied for the greatest risk, P3-EX will prompt the physician to choose an American College of Sports Medicine strategy to prioritize one CVD risk factor to personalize the Frequency, Intensity, Time, and Type (FITT) exercise prescription. P3-EX will also produce special exercise considerations for the prioritized CVD risk factor. The physician will print the exercise prescription and give it to the patient to perform for 12 weeks.

UConn Graduate Research Assistants will provide patients with virtual weekly oversight to follow their P3-EX unsupervised exercise program for 12 weeks. Patients will choose the location and the FITT of exercise they prefer. UConn Graduate Research Assistants will provide all patients with a 12-week exercise program information packet containing progressive FITT exercise recommendations for their exercise program. Patients will use an exercise diary called the Timeline Followback for Exercise to record the FITT of exercise daily. Patients will attend two virtual study visits led by UConn Graduate Research Assistants during the first week and midway through the intervention to receive standardized guidance on how they are doing following their exercise program. UConn Graduate Research Assistants will email all patients weekly to provide their progressive FITT exercise recommendations and summary reports of their Timeline Followback for Exercise recordings.

Experimental - 12 Week P3-EX Unsupervised Exercise Program with Virtual Weekly Oversight from Graduate Research Assistants

Physicians will use a hard copy instruction manual adapted from the Exercise is Medicine HealthCare Providers' Action Guide to deliver the American College of Sports Medicine Physical Activity Vital Sign (ACSM-PAVS), a generic exercise program to improve general health.

The physician will ask the patient exercise preparticipation health screening questions to determine whether medical clearance is needed. The physician will assess their patient's physical activity levels as a vital sign (i.e., minutes per week of moderate to vigorous intensity exercise and days per week of resistance exercise). The physician will give the patient the ACSM-PAVS exercise program as a handout, which recommends the Physical Activity Guidelines for Americans of 150 minutes per week of moderate and/or 75 minutes per week of vigorous intensity aerobic exercise (or a combination) and 2 days per week of muscular strengthening exercise.

University of Connecticut (UConn) Graduate Research Assistants will provide patients with virtual weekly oversight to follow their ACSM-PAVS unsupervised exercise program for 12 weeks. Patients will choose the location and the FITT of exercise they prefer. UConn Graduate Research Assistants will provide all patients with a 12-week exercise program information packet containing progressive FITT exercise recommendations for their exercise program. Patients will use an exercise diary called the Timeline Followback for Exercise to record the FITT of exercise daily. Patients will attend two virtual study visits led by UConn Graduate Research Assistants during the first week and midway through the intervention to receive standardized guidance. UConn Graduate Research Assistants will email all patients weekly to provide their progressive FITT exercise recommendations and summary reports of their Timeline Followback for Exercise recordings.

Active Control - 12 Week ACSM-PAVS Unsupervised Exercise Program with Virtual Weekly Oversight from Graduate Research Assistants

Peter F Robinson, MD

Antonio B Fernandez, MD

Linda S Pescatello, PhD

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회원 모집 중

희귀난치성 질환 거짓부갑상선기능저하증 환우회입니다. 환자·보호자 분들과 소통하며 정보 공유를 하는 공간입니다.

<dl class="v3-editor-content-dictionary">
<dt>거짓 부갑상선기능저하증 이란?</dt>
<dd>거짓 부갑상선기능저하증은 부갑상선호르몬 수치는 정상이나 호르몬에 대한 부적절한 반응으로 특징되는 유전 질환입니다. 이러한 반응은 뼈 성장에 영향을 미칠 수 있습니다. X-염색체 연관 혹은 상염색체 우성 유전양식으로 유전됩니다.</dd>
<dd> </dd>
<dd><a href="rarenote://MedicalNewsDetail?id=a30039d0-4a44-44da-b6f1-d1a819dc0100">질환에 대해 더 알아보기</a></dd>
</dl>
'거짓부갑상선기능저하증 환우회' 는 국내 거짓 부갑상선기능저하증 환자와 보호자들을 위한 커뮤니티로, 2024년에 설립되었어요.
네이버 카페로 운영되며, 질환과 관련된 정보를 교류하고 소통할 수 있는 공간입니다.

거짓부갑상선기능저하증 환우회

네이버 카페

여러분은 혼자가 아닙니다. 힘내세요(Stay Strong), 계속 나아갑시다(Press on).

<dl class="v3-editor-content-dictionary">
<dt>알라질 증후군 이란?</dt>
<dd>알라질 증후군(Alagille's syndrome)은 간내 담도의 수가 현저하게 감소하고 담즙정체를 나타내며 심혈관계, 골격계, 안구, 안면, 췌장, 신경발달의 장애를 동반할 수 있는 증후군입니다.</dd>
<dd> </dd>
<dd><a href="rarenote://MedicalNewsDetail?id=d0179964-8d3b-41be-b7ac-e61810909f13">질환에 대해 더 알아보기</a></dd>
</dl>
'알라질 증후군 환우모임' 밴드는 국내 알라질 증후군 환자와 보호자들을 위한 커뮤니티로, 2025년에 설립되었어요.
네이버 밴드로 운영되며, 알라질 증후군 관련 정보를 교류하고 소통할 수 있는 공간입니다.

알라질 증후군 환우모임

네이버 밴드

비정형 용혈요독증후군 환우·보호자들이 모여있는 오픈 채팅방으로 질환 및 치료에 대한 정보를 공유하고, 일상을 공감합니다.

비정형 용혈요독증후군(aHUS) 카카오톡 오픈채팅방

오픈 채팅방

저인산효소증 환우·보호자들이 모여있는 오픈 채팅방으로 질환 및 치료에 대한 정보를 공유하고, 일상을 공감합니다.

임상시험 현황

영양, 심리 및 운동을 포함하는 조기 구조화된 수술 후 중재

포함된 각 환자에 대해 아래에 설명된 샘플이 수집됩니다.

하체까지 포함하는 양손 집중 치료(HABIT-ILE) + 기능적 근력 훈련(FST)

실험군 - 12주간 P3-EX 자율 운동 프로그램 (대학원 연구 조교의 주간 온라인 지도 포함), 대조군 - 12주간 ACSM-PAVS 자율 운동 프로그램 (대학원 연구 조교의 주간 온라인 지도 포함)

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