登記和調查
ECD Patient Registry
ECD research needs your help! An Erdheim-Chester Disease patient registry database has been developed. Now we need your data to make it useful!
The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance knowledge of ECD and its treatment. Read about the registry in detail below, including how to enroll.
Please note that by joining the ECD Patient Registry, you are NOT joining the ECD Global Alliance membership! If you are not yet a member of the ECDGA, please also join the ECDGA by following this link below. If you are already a member, please consider also joining the Registry.
要瞭解您是否有資格參與 ECD 患者登記，請點擊此連結。
Read the most recent data published from the registry collection: 2020 Registry Update
In late 2018, the registry resulted in the following symptom-assessment article. Findings conclude that patients with ECD possess widely varied and unappreciated symptomatology. A scale for patient-reported symptom assessment for patients with Erdheim-Chester disease
關於註冊表
The Erdheim-Chester Disease Registry, led by Memorial Sloan Kettering Cancer Center (MSK), unites leading researchers with people like you who are interested in taking part in building an informational database. The focus of this registry will be to help scientists advance our knowledge of ECD, how it affects the lives of patients, and how ECD treatments work. The ultimate goal – a cure!
Erdheim-Chester disease (ECD) is a rare disease that affects about 1,000 people worldwide. Because ECD is so rare, we are creating a patient registry to help gather information on ECD. A medical registry is a systematic collection of a clearly defined set of health and demographic data for patients with specific health problems, held in a central database for a predefined purpose. In the case of the ECD Registry, it will serve to increase knowledge about the condition and how it may be treated.
The focus is to understand more about what kinds of health problems are caused by ECD, what happens as a result of different treatments for ECD, and how ECD affects people’s feelings and attitudes. We also want to learn how these things change over time for people with ECD. To try to figure this out, doctors would like to collect information about people who have Erdheim-Chester disease and how they are treated for the disease.
為什麼要加入？
僅在過去十年中，科學家們在抗擊這種疾病方面就取得了巨大進展，並且每年都有新的研究推出。但研究人員不能獨自完成這項工作;他們需要像您這樣的人提供資訊來進行研究。
紀念斯隆凱特琳癌症中心 （MSK） 是該集中式資料庫和樣本存儲的可靠保管人。這些數據將提供給研究該疾病的研究人員。該登記處旨在回答問題併為研究人員提供資訊以找到有效的治療方法。
ECDGA 致力於繼續管理該註冊表併為其提供資金，以便我們能夠繼續發展該資料庫將為社區提供的寶貴資訊。
註冊表如何運作？
如果您想參與 Registry 計劃，MSK 團隊將要求您的醫生發送以下資訊。
- 醫療報告（醫生記錄、實驗室和掃描報告）
- 如果可用，將收集先前活檢或手術的碎片並用於有關 ECD的未來研究。 如果您尚未進行活檢或不想將活檢樣本寄送給 MSK 斯隆，您仍然可以加入登記處。
- Registry 還將收集您過去可能進行的與您的疾病相關的任何掃描的副本，包括 MRI、PET、X 射線或 CT 掃描。 如果您不想將掃描結果發送到 MSK，您仍然可以加入註冊表。
加入註冊表不會產生任何費用。如果您決定參與此研究資料庫，您的研究部分將包括完成有關您的癥狀和生活質量的調查，也稱為問卷。本研究的問卷可以在互聯網或紙質上完成，然後郵寄回紀念斯隆凱特琳癌症中心。如果您選擇以紙質方式完成調查，您將獲得預付郵資，以便您可以將調查寄回。請在下方找到在線調查連結。
當您加入時、加入 6 個月後，您將被要求完成調查，並且每年一次，為期 3 年。如果您的 ECD 治療因任何原因發生變化，您也會被要求完成調查。
如何加入 ECD 患者登記處？
如果您有興趣瞭解有關本研究的更多資訊，請通過電話或電子郵件聯繫研究團隊。
電話 （212） 610-0720
傳真 （929） 321-1050
電子郵件： neuECDRegistry@mskcc.org
您將有機會討論研究的細節，並在就是否參與做出明智的決定之前提出盡可能多的問題。
如果您決定參加該研究，您將獲得一份知情同意書，以書面形式為您提供有關該研究的詳細資訊。閱讀同意書後，您可能還有其他問題需要回答。一旦您的所有問題都得到滿意的回答，您將被要求簽署同意書。
如果您通過電話完成同意流程並簽署郵寄給您的同意書，那麼您將獲得一個預付信封，用於將您簽署的同意書寄回給協調員。
此同意過程可以通過電話或互聯網完成，無需前往 MSK 斯隆參加研究。要瞭解您是否有資格參與 ECD 患者登記，請點擊此連結。
誰可以參加？
任何被診斷出患有 ECD 並且病歷為英文的人都可以參加這項研究。歐洲法律限制來自某些歐洲國家的個人參與。
即使您不是 MSK 的病人，您也可以加入登記處。
隱私和保密
您的隱私對我們來說非常重要，研究人員將盡一切努力保護它。如有必要，MSK 斯隆訓練有素的工作人員可能會查看您的記錄。
如果您從這項研究中獲得的信息被用於任何報告或出版物，則不會使用您的姓名或任何其他可以識別您身份的資訊。
如果法律要求，您的資訊可能會被提供。例如，某些州要求醫生在發現結核病等疾病時向衛生委員會報告。但是，研究人員將盡最大努力確保發佈的任何資訊不會識別您的身份。
對您的受保護健康資訊的訪問將僅限於研究授權表中列出的資訊，這是知情同意過程的一部分。
如果我加入 ECD 患者登記處，這與加入 ECD 全球聯盟相同嗎？
No, the ECD Patient Registry is separate from the ECD Global Alliance. If you would like to join the ECD Global Alliance and become a member of our community, please follow the link below to register with the ECD Global Alliance. We hope that you will join both to help further research on ECD, however, this is voluntary and is your choice.
A close relationship between the patient community and the ECD Global Alliance allows easy promotion of patient involvement in research studies and clinical trials vital to bringing safe and effective treatments to market. Being a registered member of the ECD Global Alliance allows you to be notified when new studies and treatments are available.
Here are more reasons to join the ECDGA!
- Empowerment: You don’t have to be a victim. You can make a difference.
- Meet Other People: Cut through the isolation and make new friends.
- Find the Latest Treatment Information: New treatments, tips, and information are available from the organization and its members.
- Have Fun: Be around people who “get it” and find ways to incorporate what you love into helping find a cure.
- Gain New Skills: Volunteer opportunities are limitless.
- Set an Example: Show others what can be done and how hard work helps to “manage problems.”
- Get Access to Experts: Access to ECD experts is available through the organization.